Thanksgiving: we had turkey, of course. And mashed potatoes and green beans. And pie - LOTS of pie! But best of all, according to Jamesy, was the stuffing, which he consumed by the metric ton - but absolutely not until he had his fork.
Gratitude.
When praised for his expert use of silverware, he responded by giving me a high five.
Gratitude.
Later, I asked him if he was all done, signing appropriately; he answered me by shaking his head "no" and signing "more more more".
Gratitude.
Even later, while watching him color very intently, I said, to the back of his head, "Mommy loves you", in response to which he came over, put his arms in the air, said "uh" until I lifted him into my lap, where he bear-hugged me repeatedly, putting my hands back around him whenever I stopped.
Gratitude.
While changing his diaper, I began teaching him the sign for "potty", folding his fingers over and moving his hand for him. When I stopped, he grabbed my hand and placed it over his to put his fingers in position again, and we repeated this several times to his obvious smiling delight.
Gratitude.
When he tired of this, we simply sat for a time on the couch, and I jokingly counted his toes, an old trick of which he never tires - particularly when I reach "FIVE!!" and tickle him. After several rounds of confirming his toe count, he interrupted me by grabbing MY toes, and bending over to push his face against my foot. Well, that's an odd one, I thought. So it took me a few moments, but then I finally realized: I was getting my first Jamesy kiss.
Gratitude.
Now he is in his crib, playing with his musical toys, happily babbling with lots of "ma ma ma"s and "da da da"s mixed in.
Gratitude.
It has been a helluva day.
Friday, November 26, 2010
Thursday, November 18, 2010
Doldrums
What we have here, folks, is a lack of progress.
Ok, maybe that's not entirely fair. We have continued, if incremental, improvements in eye contact, in ability to stay focused on a task, in ability to be redirected when James loses interest in whatever. We continue to have a wonderful giggle and a great penchant for smooches and hugs. All of these are wonderful, make no mistake.
What we DON'T have is talking.
In fact, we seem to be losing ground.
We still have "uh" for "up" (with arm gesture, of course), and "ba" for bottle and "ma ma ma" for "mama" and "mmmmmm" for "more" and "milk" and possibly also "moo" and "me". We very occasionally have "Da".
And that's it.
We have babble, but it seems less frequent to me. Our Speech Therapist is not worried, because when he DOES babble, it seems to be more purposeful - we both hear the cadence of language, like when little kids imitate French or Italian, even if we are not hearing words.
But other than that, we seem to be stagnating on a vast windless sea of speech, with nothing to interrupt the long monotony of the verbal horizon. (Gee, that was pretty. I'd edit it for being overblown but, hey, it's my blog and I like it.)
I am... dispirited.
I know this is a lifelong process, and I know our good fortune in having a kid who - if he has to be on the spectrum - is so affable and flexible is more good fortune than many (most?) who are dealing with this crap. So wishing that the bright shiny honeymoon feel of the beginnings of therapy, when breakthroughs seemed imminent each time someone came to work with him, seems ungrateful to me, unmindful of the good we DO have.
But I know I'm not. In fact, it's impossible to be, when you are greeted each morning by those crazy dimples and big turquoise eyes full of mischief. How can you not love the chance to be this kid's mom?
But - as his mom - how can I not also wish that things were different for him, that he could tell me all about what he sees and likes and wants and dreams? I don't wish he wasn't autistic, necessarily. That would be swell, don't get me wrong. But if he could stay exactly the Jamesy he is, only be able to TELL me about it... well, that... that would be something wonderful.
Something MORE wonderful.
Doldrums or not, he's still pretty damn wonderful as it is.
Ok, maybe that's not entirely fair. We have continued, if incremental, improvements in eye contact, in ability to stay focused on a task, in ability to be redirected when James loses interest in whatever. We continue to have a wonderful giggle and a great penchant for smooches and hugs. All of these are wonderful, make no mistake.
What we DON'T have is talking.
In fact, we seem to be losing ground.
We still have "uh" for "up" (with arm gesture, of course), and "ba" for bottle and "ma ma ma" for "mama" and "mmmmmm" for "more" and "milk" and possibly also "moo" and "me". We very occasionally have "Da".
And that's it.
We have babble, but it seems less frequent to me. Our Speech Therapist is not worried, because when he DOES babble, it seems to be more purposeful - we both hear the cadence of language, like when little kids imitate French or Italian, even if we are not hearing words.
But other than that, we seem to be stagnating on a vast windless sea of speech, with nothing to interrupt the long monotony of the verbal horizon. (Gee, that was pretty. I'd edit it for being overblown but, hey, it's my blog and I like it.)
I am... dispirited.
I know this is a lifelong process, and I know our good fortune in having a kid who - if he has to be on the spectrum - is so affable and flexible is more good fortune than many (most?) who are dealing with this crap. So wishing that the bright shiny honeymoon feel of the beginnings of therapy, when breakthroughs seemed imminent each time someone came to work with him, seems ungrateful to me, unmindful of the good we DO have.
But I know I'm not. In fact, it's impossible to be, when you are greeted each morning by those crazy dimples and big turquoise eyes full of mischief. How can you not love the chance to be this kid's mom?
But - as his mom - how can I not also wish that things were different for him, that he could tell me all about what he sees and likes and wants and dreams? I don't wish he wasn't autistic, necessarily. That would be swell, don't get me wrong. But if he could stay exactly the Jamesy he is, only be able to TELL me about it... well, that... that would be something wonderful.
Something MORE wonderful.
Doldrums or not, he's still pretty damn wonderful as it is.
Monday, October 18, 2010
Reading Comprehension
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?
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 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 :)
Wednesday, September 22, 2010
IFS Pee
His IFSP was wonderful.
Not often you get to hear a parent say that, but hey - the team is united in its appreciation of his progress (steady, obvious and amazing) and in its approach (everyone arrived at similar goals BEFORE talking with one another), and I would not trade any of them. Having worked in fields and positions requiring numerous team meetings, and having therefore seen first-hand what a NON-functional team looks like, I am acutely aware of the rarity and value of this confluence of personality and profession, and the fact that they all obviously adore him doesn't hurt either.
Once we got over how just super-duper fabulous we all are, together and individually (it was quite the attaboyfest for a while there), we moved on to the Big Question of What Next. I'll spare you the backing-and-forthing, since it was all speculative, and get right to it; we finally decided that he would be best served by continuing to stay at home, upping the services he receives from each therapist. Amusingly, I went into the meeting thinking I was open-minded to both the at-home and the center-based therapy approaches, and genuinely seeking to hear arguments for both approaches so I could THEN come to a decision, but since I wanted to jump and down and yell "SQUEEEEEE!!!" each time someone advocated for staying at home, we know the truth.
A number of excellent other items were brought to my attention, as well. For instance, I found out that even when he ages out of Early Intervention and into the welcoming arms (hush, work with me here) of the school district, he does NOT, in fact, have to go to a preschool someplace, at age 3, to receive services. AND many of our current therapists would wind up being his service providers here if we chose to continue keeping him home. AND we could request the others. So.. yay, yay, and YAY!
Meanwhile, Mr. Boy is now shape- and color-sorting like a pro (is there an Olympic event for this?) and babbling up a storm with all kinds of new sounds ("k", "ch", "t") AND...
.. are you ready?...
said "Dada" finally, much to Daddy's infinite delight :)
AND
(brace yourselves)
said "diaper on" ("die-poo ohn") as a I changed him... and nearly wet himself (and me; the diaper in question was still open at the time) laughing when I repeated it at him wonderingly.
#happiness !
Not often you get to hear a parent say that, but hey - the team is united in its appreciation of his progress (steady, obvious and amazing) and in its approach (everyone arrived at similar goals BEFORE talking with one another), and I would not trade any of them. Having worked in fields and positions requiring numerous team meetings, and having therefore seen first-hand what a NON-functional team looks like, I am acutely aware of the rarity and value of this confluence of personality and profession, and the fact that they all obviously adore him doesn't hurt either.
Once we got over how just super-duper fabulous we all are, together and individually (it was quite the attaboyfest for a while there), we moved on to the Big Question of What Next. I'll spare you the backing-and-forthing, since it was all speculative, and get right to it; we finally decided that he would be best served by continuing to stay at home, upping the services he receives from each therapist. Amusingly, I went into the meeting thinking I was open-minded to both the at-home and the center-based therapy approaches, and genuinely seeking to hear arguments for both approaches so I could THEN come to a decision, but since I wanted to jump and down and yell "SQUEEEEEE!!!" each time someone advocated for staying at home, we know the truth.
A number of excellent other items were brought to my attention, as well. For instance, I found out that even when he ages out of Early Intervention and into the welcoming arms (hush, work with me here) of the school district, he does NOT, in fact, have to go to a preschool someplace, at age 3, to receive services. AND many of our current therapists would wind up being his service providers here if we chose to continue keeping him home. AND we could request the others. So.. yay, yay, and YAY!
Meanwhile, Mr. Boy is now shape- and color-sorting like a pro (is there an Olympic event for this?) and babbling up a storm with all kinds of new sounds ("k", "ch", "t") AND...
.. are you ready?...
said "Dada" finally, much to Daddy's infinite delight :)
AND
(brace yourselves)
said "diaper on" ("die-poo ohn") as a I changed him... and nearly wet himself (and me; the diaper in question was still open at the time) laughing when I repeated it at him wonderingly.
#happiness !
Wednesday, September 15, 2010
NEWSFLASH
Our most excellent Psych Therapist, Jeff, is soon-to-be-famous! He will be on the Discovery Channel tomorrow night (Thursday, 9pm, "Big Kids") and those who would like to quell their curiosity about at least one of the cast of characters in Jamesy's life should tune in!
Mightier than the Sword
So here's the scene:
We're taking a bath. (Well... James is taking a bath, and I am perched outside the tub, reaching around the sliding glass doors while trying not to a) sprain something or b) get wet.) Things are going well. I am dry and - so far - uninjured, and a summer full of fun in kiddie pools and on water slides and being sprayed by the hose has paid off; getting a hair wash is no longer cause for a major international outcry against unconscionable abuse at the hands of his No-More-Tears-wielding maniac of a mother.
And then the penis fun starts.
First, we discover that shampoo rinse-water running down our front drizzles interestingly over ALL the bits on the front of us. "Ooo, look! A penis!" we say. "Right down there, where the water went! I wonder what it does?"
Then, we discover that penises can do tricks. (He. HE discovers. Enough with this 'royal we' crap. I'm not sure how that got started anyway. Lack of caffeine? Yes, let's blame that!) SO.. penises can do tricks, HE discovers...
For instance, if you pull on one, it stretches. A lot. A LOT a lot. So much that if you pull it really really REALLY far, your mother will make a pretty hilarious face and thrash around all over the place trying to figure out how to make you let go without permanently damaging the goods or knocking you over when she grabs at you around the bathtub doors.
Another trick they can do is stand up all by themselves, and when you whack at them while they're standing up, they get all sproingy. And then you can put stuff on 'em, like washcloths and bathtoys. Mommy must think that's pretty funny, too, because when I put bubbles on it and then went SPROING and the bubbles got all over her face and my head, she laughed really hard and said something about "Oh my god, baby boners"... but I didn't see any bones, so I don't know what she meant. She's a little weird sometimes anyway.
(Yes, now I'm writing in Jamesy's voice. If the kid ever learns to read, I hope he's merciful... Meanwhile, onward!)
But you know what the COOLEST thing they do is?
They make A PEN!
No, really, I swear! I was just standing there, minding my business, when, like, POW! ZOOM! All this water was coming out and I could draw in the bubbles!!
And drawing is only, like, my favoritest thing EVER. And Mom was so effing cool, when I did it the first time, she made all the water go away and made NEW BUBBLES so I could do it AGAIN!! Is she not the coolest mom EVER?? And I didn't even have to sign "more"! I had to get out of the tub right after the second time, though. That part kinda sucked. But still!!
I swear, sometimes I could even forgive her for that picture of my blue butt in the sandbox. Oh, you never saw it? I'm amazed; I mean, she only posted it on her Facebook, fer cryin' out loud. The woman has no life. Thank god she isn't reading this, or she'd probably post i - HEY! NO! Back away from the computer, Mom, or I swear to god, I'll wait until my diaper's open and draw on your whole head! Do not touch that "insert pic" button. DO NOT TOUCH THE BUTTON. Do. NOT! NO!! Dammit, Woman, leave me SOME dignity...
...*sigh*....
We're taking a bath. (Well... James is taking a bath, and I am perched outside the tub, reaching around the sliding glass doors while trying not to a) sprain something or b) get wet.) Things are going well. I am dry and - so far - uninjured, and a summer full of fun in kiddie pools and on water slides and being sprayed by the hose has paid off; getting a hair wash is no longer cause for a major international outcry against unconscionable abuse at the hands of his No-More-Tears-wielding maniac of a mother.
And then the penis fun starts.
First, we discover that shampoo rinse-water running down our front drizzles interestingly over ALL the bits on the front of us. "Ooo, look! A penis!" we say. "Right down there, where the water went! I wonder what it does?"
Then, we discover that penises can do tricks. (He. HE discovers. Enough with this 'royal we' crap. I'm not sure how that got started anyway. Lack of caffeine? Yes, let's blame that!) SO.. penises can do tricks, HE discovers...
For instance, if you pull on one, it stretches. A lot. A LOT a lot. So much that if you pull it really really REALLY far, your mother will make a pretty hilarious face and thrash around all over the place trying to figure out how to make you let go without permanently damaging the goods or knocking you over when she grabs at you around the bathtub doors.
Another trick they can do is stand up all by themselves, and when you whack at them while they're standing up, they get all sproingy. And then you can put stuff on 'em, like washcloths and bathtoys. Mommy must think that's pretty funny, too, because when I put bubbles on it and then went SPROING and the bubbles got all over her face and my head, she laughed really hard and said something about "Oh my god, baby boners"... but I didn't see any bones, so I don't know what she meant. She's a little weird sometimes anyway.
(Yes, now I'm writing in Jamesy's voice. If the kid ever learns to read, I hope he's merciful... Meanwhile, onward!)
But you know what the COOLEST thing they do is?
They make A PEN!
No, really, I swear! I was just standing there, minding my business, when, like, POW! ZOOM! All this water was coming out and I could draw in the bubbles!!
And drawing is only, like, my favoritest thing EVER. And Mom was so effing cool, when I did it the first time, she made all the water go away and made NEW BUBBLES so I could do it AGAIN!! Is she not the coolest mom EVER?? And I didn't even have to sign "more"! I had to get out of the tub right after the second time, though. That part kinda sucked. But still!!
I swear, sometimes I could even forgive her for that picture of my blue butt in the sandbox. Oh, you never saw it? I'm amazed; I mean, she only posted it on her Facebook, fer cryin' out loud. The woman has no life. Thank god she isn't reading this, or she'd probably post i - HEY! NO! Back away from the computer, Mom, or I swear to god, I'll wait until my diaper's open and draw on your whole head! Do not touch that "insert pic" button. DO NOT TOUCH THE BUTTON. Do. NOT! NO!! Dammit, Woman, leave me SOME dignity...
...*sigh*....
Tuesday, September 14, 2010
A Cloud for Every Silver Lining
It's been a busy day, and I have found myself feeling very scattered (as opposed to my usual sense of being a model of organizational prowess, ho ho, ha ha).
I actually had some web work to do, wrestling a client's recalcitrant e-newsletter into submission via my epic HTML skills, while simultaneously trying to feed and dress Katie & James. (Imagine trying to cut a tough steak using a Playdoh knife while being pecked at by vicious hummingbirds and you will have a feel for how this went.) Meanwhile, James had 2 therapy visits, and his service coordinator was also on the phone over and over as we try to hash out a date for his first team meeting, since his IFSP expires on Oct. 1. One of our issues at hand is that while James (who turns 3 in May) is eligible to attend a local center-based program come January, Katie could only go to it with him if a) we pay $500/month (OUCH!), b) we drive her in (it's half an hour away; James would be bussed) and pick her up, and c) she turns 4 by December, which she doesn't (not until June). So much for that.
Originally, when faced with discussions about James transitioning from Early Intervention into the school district, we felt that the best scenario was to have the two of them attend a universal program together - whether or not they were actually in the same classes - because neither would thrive if home alone. Of course, this is no longer an option. So now the question is, would James be better served by remaining home with Katie until the new school year starts next September when both of them can go off to wherever they go (individually or together, whatever), particularly if we can get all his therapies upped to three times a week, or should we send him to the center alone (My baby! Alone! On a bus! ACK!) and see if we can't find a local (the center is a good half hour ride away) playschool-type daycare for Katie a couple of times a week.
So it was turning into quite the not-enough-caffeine-in-the-universe day, and I was rising to the challenge by musing about creative ways to fit a nap into all of this somehow (Forts in Mommy's bed? Let's see how many stories we can read with this flashlight under the covers in your bed? Who can stay quiet the longest?) when I decided to bop over to Facebook for some... um... research... and noticed a link on my feed from a facility I had "liked" a while back and then promptly forgotten about. Coincidentally, it's a center-based preschool (unfortunately in southern NJ) . I went to their page to finish reading something and a slew of paid ads popped up to the right, as per Facebook usual, one of which was for some assisted living-type apartments for adults with autism.
And for a moment, I was 20 years older, and reading this with an eye toward having to place my boy there because he can't care for himself and someday I won't be here either. My stomach dropped, and I swear I could hear another ominous creak from the direction of my chest as my heart threatened to break just a tiny bit.
Is this what he has to look forward to? My sunny little guy, who spent today looking to Momma for claps, then running victory laps around the living room and dissolving into a heap of giggles on the rug each time he correctly sorted shapes for his Special Skills therapist? (Which was almost every time!) Who cracked his Speech Therapist up when she asked him to take something and instead of whining or rebelling, he simply placed his hand gently over hers, pushed it down away from him, and very methodically shook his head "no"... then grinned and took the offered item anyway, chuckling at himself? THAT guy?
Suddenly the enormity of the future with all its uncertainty came crashing down on me, and all I could see was loneliness and dependence and...
...gah.
Yes, I know the positives. I used to work in these places. Hell, I've RUN these places. And they are admittedly a far better alternative than living WITHOUT the supports they offer, if you need them. And he may not ever need them; he is progressing marvelously and who knows what the future may hold for my beautiful, shining boy? But they aren't home, and those responsible for helping him there might care for him too, but they will never love him.
Good gods, but autism sucks sometimes. And motherhood? How can anyone be prepared for this? There are times when the only sensible response seems to be wailing and finding a corner to hide in.
But then there's this:
... which we file under "Raising smurfs makes it all worth it" :)
I actually had some web work to do, wrestling a client's recalcitrant e-newsletter into submission via my epic HTML skills, while simultaneously trying to feed and dress Katie & James. (Imagine trying to cut a tough steak using a Playdoh knife while being pecked at by vicious hummingbirds and you will have a feel for how this went.) Meanwhile, James had 2 therapy visits, and his service coordinator was also on the phone over and over as we try to hash out a date for his first team meeting, since his IFSP expires on Oct. 1. One of our issues at hand is that while James (who turns 3 in May) is eligible to attend a local center-based program come January, Katie could only go to it with him if a) we pay $500/month (OUCH!), b) we drive her in (it's half an hour away; James would be bussed) and pick her up, and c) she turns 4 by December, which she doesn't (not until June). So much for that.
Originally, when faced with discussions about James transitioning from Early Intervention into the school district, we felt that the best scenario was to have the two of them attend a universal program together - whether or not they were actually in the same classes - because neither would thrive if home alone. Of course, this is no longer an option. So now the question is, would James be better served by remaining home with Katie until the new school year starts next September when both of them can go off to wherever they go (individually or together, whatever), particularly if we can get all his therapies upped to three times a week, or should we send him to the center alone (My baby! Alone! On a bus! ACK!) and see if we can't find a local (the center is a good half hour ride away) playschool-type daycare for Katie a couple of times a week.
So it was turning into quite the not-enough-caffeine-in-the-universe day, and I was rising to the challenge by musing about creative ways to fit a nap into all of this somehow (Forts in Mommy's bed? Let's see how many stories we can read with this flashlight under the covers in your bed? Who can stay quiet the longest?) when I decided to bop over to Facebook for some... um... research... and noticed a link on my feed from a facility I had "liked" a while back and then promptly forgotten about. Coincidentally, it's a center-based preschool (unfortunately in southern NJ) . I went to their page to finish reading something and a slew of paid ads popped up to the right, as per Facebook usual, one of which was for some assisted living-type apartments for adults with autism.
And for a moment, I was 20 years older, and reading this with an eye toward having to place my boy there because he can't care for himself and someday I won't be here either. My stomach dropped, and I swear I could hear another ominous creak from the direction of my chest as my heart threatened to break just a tiny bit.
Is this what he has to look forward to? My sunny little guy, who spent today looking to Momma for claps, then running victory laps around the living room and dissolving into a heap of giggles on the rug each time he correctly sorted shapes for his Special Skills therapist? (Which was almost every time!) Who cracked his Speech Therapist up when she asked him to take something and instead of whining or rebelling, he simply placed his hand gently over hers, pushed it down away from him, and very methodically shook his head "no"... then grinned and took the offered item anyway, chuckling at himself? THAT guy?
Suddenly the enormity of the future with all its uncertainty came crashing down on me, and all I could see was loneliness and dependence and...
...gah.
Yes, I know the positives. I used to work in these places. Hell, I've RUN these places. And they are admittedly a far better alternative than living WITHOUT the supports they offer, if you need them. And he may not ever need them; he is progressing marvelously and who knows what the future may hold for my beautiful, shining boy? But they aren't home, and those responsible for helping him there might care for him too, but they will never love him.
Good gods, but autism sucks sometimes. And motherhood? How can anyone be prepared for this? There are times when the only sensible response seems to be wailing and finding a corner to hide in.
But then there's this:
... which we file under "Raising smurfs makes it all worth it" :)
Saturday, August 7, 2010
Designer Labels, redux
NOTE: I began this entry a month ago. I'm going to finish it as if it were August, and then do another one tomorrow to bring you up to date. Why? Because I can. So there!
..............................................................................................................................
Ah, what a glorious thing to always be right!
NOT.
So, the visit to the Developmental Pediatrician. A swell time had by all. We rose at caffeine o'clock, stumbled into the van, and had a LOOOOONG ride, during which time James sang to me from the moment we started until the moment - several hours later - that we stopped. And he also rocked. And hooted. And threw various things! And generally was in a cheerful uproar. Apparently this getting up before roosters agrees with one of us.
We were early, and greeted by a surly receptionist who informed me, icily, that the doctor might not see me because "it is recommended that both parents attend so that the doctor may talk with one while the other watches the child, so he won't be a distraction."
"Distraction"? Dander: UP.
After informing her with no small amount of ice in my own voice that my son was a PATIENT, and the reason for the doctor having a practice to begin with, thankyouverymuch, I agreed that she should go check with the doctor to see whether this visit was going to take place after all or not. (In my head, I also suggested she check to see if she still had a job the next day, because I wanted to have her fired, publicly humiliated, and quite possibly fried in oil like the huge potato she resembled - but I held my tongue. I am the very embodiment of discretion, oh yes I am!)
So the short story is we had the visit after all, and the doctor was lovely, and we were there for HOURS (James even fell asleep in my lap as we sat on the floor and played), and he was charming and playful and did all his "things" for her, both positive and negative... and in the end, I walked out with the coveted Diagnosis on Paper. (Handwritten on office letterhead, but what the hey.)
As predicted by NostraMomus: PDD-NOS.
So what does this mean? This wonderful classification that we struggled and waited for all these months? That we all agreed would be the ultimate answer, since no other diagnosis fits?
Turns out, not a whole hell of a lot.
I have yet to apply for Social Security benefits for him, which it seems may be the only good reason to have bothered with all of this. We may or may not need the diagnosis to smooth the transition from Early Intervention to the school system - seems the district will be re-evaluating him regardless - and so far, those appear to be the only things we might conceivably have needed it for.
Oh yeah, and our peace of mind.
That.
Funny thing: operating without a 'real' diagnosis felt simultaneously reassuring, because we were Doing Something For Our Son, and disturbing, because we don't really know what's wrong, do we? I mean, we're treating symptoms but not the disease, right? Right?
Hello?
So oddly, now that we have this diagnosis, all the therapy feels somehow LESS targeted, and more 'throwing S&*^ at the wall to see what sticks'.
New Note: I lied. Evidently, I'm moving right up to now in this post. See where I did that? Slick, huh?
This despite the fact that it became increasingly evident, as end-of-summer changes in schedule made our therapy visits more and more sporadic, that James' behavior was suffering. His sleep patterns went all to hell, his rocking and flapping - which had all but disappeared - seemed to increase daily as Labor Day approached, and even though there were moments of incredible progress (imaginary play that he instigated with his sister's tea set, out of the blue; playfully feeding me a french fry one day when I was trying to feed him; his refusal to eat without his fork; and his sudden discovery of how to use a straw, relegating his bottle abruptly to 'toy i can make messes with' status and his sippy cup with built-in straw to 'must-have'; pointing to items in books correctly on demand), overall, he seemed to be losing ground in the areas that originally drove us to seek help to begin with.
Clearly, he both wanted and needed his wonderful group of pros helping him work all this stuff out, and was feeling their loss - sometimes quite keenly. And yet...
I guess, in retrospect, some foolish part of me had hoped that getting a diagnosis would mean moving ever forward and upward, firmly in control. Since I've never done that in any other part of my life, I'm not sure why I thought this would be the place where I started, but there you have it. Very mixed feelings, after all of this.
BUT: We should end with the most important thing, no? So here it is:
Fear not... it's chocolate frosting!
..............................................................................................................................
Ah, what a glorious thing to always be right!
NOT.
So, the visit to the Developmental Pediatrician. A swell time had by all. We rose at caffeine o'clock, stumbled into the van, and had a LOOOOONG ride, during which time James sang to me from the moment we started until the moment - several hours later - that we stopped. And he also rocked. And hooted. And threw various things! And generally was in a cheerful uproar. Apparently this getting up before roosters agrees with one of us.
We were early, and greeted by a surly receptionist who informed me, icily, that the doctor might not see me because "it is recommended that both parents attend so that the doctor may talk with one while the other watches the child, so he won't be a distraction."
"Distraction"? Dander: UP.
After informing her with no small amount of ice in my own voice that my son was a PATIENT, and the reason for the doctor having a practice to begin with, thankyouverymuch, I agreed that she should go check with the doctor to see whether this visit was going to take place after all or not. (In my head, I also suggested she check to see if she still had a job the next day, because I wanted to have her fired, publicly humiliated, and quite possibly fried in oil like the huge potato she resembled - but I held my tongue. I am the very embodiment of discretion, oh yes I am!)
So the short story is we had the visit after all, and the doctor was lovely, and we were there for HOURS (James even fell asleep in my lap as we sat on the floor and played), and he was charming and playful and did all his "things" for her, both positive and negative... and in the end, I walked out with the coveted Diagnosis on Paper. (Handwritten on office letterhead, but what the hey.)
As predicted by NostraMomus: PDD-NOS.
So what does this mean? This wonderful classification that we struggled and waited for all these months? That we all agreed would be the ultimate answer, since no other diagnosis fits?
Turns out, not a whole hell of a lot.
I have yet to apply for Social Security benefits for him, which it seems may be the only good reason to have bothered with all of this. We may or may not need the diagnosis to smooth the transition from Early Intervention to the school system - seems the district will be re-evaluating him regardless - and so far, those appear to be the only things we might conceivably have needed it for.
Oh yeah, and our peace of mind.
That.
Funny thing: operating without a 'real' diagnosis felt simultaneously reassuring, because we were Doing Something For Our Son, and disturbing, because we don't really know what's wrong, do we? I mean, we're treating symptoms but not the disease, right? Right?
Hello?
So oddly, now that we have this diagnosis, all the therapy feels somehow LESS targeted, and more 'throwing S&*^ at the wall to see what sticks'.
New Note: I lied. Evidently, I'm moving right up to now in this post. See where I did that? Slick, huh?
This despite the fact that it became increasingly evident, as end-of-summer changes in schedule made our therapy visits more and more sporadic, that James' behavior was suffering. His sleep patterns went all to hell, his rocking and flapping - which had all but disappeared - seemed to increase daily as Labor Day approached, and even though there were moments of incredible progress (imaginary play that he instigated with his sister's tea set, out of the blue; playfully feeding me a french fry one day when I was trying to feed him; his refusal to eat without his fork; and his sudden discovery of how to use a straw, relegating his bottle abruptly to 'toy i can make messes with' status and his sippy cup with built-in straw to 'must-have'; pointing to items in books correctly on demand), overall, he seemed to be losing ground in the areas that originally drove us to seek help to begin with.
Clearly, he both wanted and needed his wonderful group of pros helping him work all this stuff out, and was feeling their loss - sometimes quite keenly. And yet...
I guess, in retrospect, some foolish part of me had hoped that getting a diagnosis would mean moving ever forward and upward, firmly in control. Since I've never done that in any other part of my life, I'm not sure why I thought this would be the place where I started, but there you have it. Very mixed feelings, after all of this.
BUT: We should end with the most important thing, no? So here it is:
Fear not... it's chocolate frosting!Friday, August 6, 2010
Designer Labels
Welcome back. Sorry for the latest delay; we've moved, and all kinds of domestic business and insanity has occurred. We've switched a bunch of therapists, and our Psych, OT and Speech folks (Jeff, Gr-beckah - as dubbed by Her Royal Highness Miss Muffet - and Rita, in order) now all come more than once a week.
And we have team consensus!
James is adorable, we all think. (So wise, these therapists.) And a conundrum. Behaviorally, he's... definitely something... but... what?
He picks up new skills like a sponge. He will now point to things in books, wave bye-bye sometimes, sign "more" a LOT, and has several times strung two words or word/signs together: most famously when he had just generally HAD it with being dragged around WalMart, and specifically HAD IT with his idiot mother, who kept cooing maternal inanities at him but who is - as he so clearly pointed out when he was finally pushed past all the limits of reasonable endurance, and was forced to shout, with great emphasis, "MO BAH!" in her face to get a damn drink - a bit dim in the what-to-do-to-solve-this-problem department.
Dear gods, was that even a sentence?
Anyway. He uses his fork with very little reminding, and is getting better with spoons. (Meaning, they stay in his hands, and sometimes even have food on them. Hey, it's an improvement!) He is getting pretty good at drinking from cups, although heaven help the fool who tries to pry his BAH out of his hands in the morning. He stacks blocks with reckless abandon, and will sometimes help you put things away. He rarely rocks or flaps these days. He never has a real tantrum, and has none of the rigidity about textures, schedules, light, noise, temperatures, or ANYTHING that is commonly associated with autism (or even his siblings)... and yet... he's just not... there's something... he doesn't...
Shit. No one knows. None of us! We all agree he's crazy-bright and sunshine-smiley and funny as hell when he giggles, which is often, and he does eye-contact and loves snuggles and what the hell do we CALL this?
So tomorrow, the long-awaited appointment with the Developmental Pediatrician. ::cue booming reverb echo:: - trician - trician -trician...
.. and supposedly, we will come out with a diagnosis. A DIAGNOSIS -osis - osis.
A diagnosis will enable me to, among other things, get him Social Security benefits, and assist me in procuring any and all services I might desire to get him, should any problems in doing so ever come up.
Which is good, right?
Right??
So, while I should be sleeping, and despite having missed a gajillion posts between then and this, I am instead feeling very put-upon by the imminent application of a label - a label I WANT, mind you, a USEFUL label - to my baby.
I know what it will be. (Jump back, Nostradamus, Momma bear is in dah HOUSE!) It will be PDD-NOS. You watch.
Why? Because N-O-S stands for "not otherwise specified", and if ever there was a kid with a pervasive developmental disorder that couldn't be specified, lawdy, this one's it.
The good doctor has been in business for 37 years doing this. She is, coincidentally, in the place I consider my spiritual home, my touchstone, where I go to recharge: Woodstock. She comes so highly recommended that it took me months to get in to see her, and I am getting up before fricking roosters to drive up there (2+ hours) just to let her ask me all the same questions I answered when I filled out the MASSIVE application (application?!) for the appointment - you remember. The one I slyly (Oh, Mom, you're so clever! How DO you do it?) put his picture on top of, so she wouldn't forget he's a somebody, not just a pile of reports, or a bunch of behaviors, or a label.
A label.
By this time tomorrow, we will have a label, and my Jamesy will be, once and for all, irrevocably, an autistic statistic. A tick on a graph. One of the crowd. A file folder in someone's office and a bunch of reports on some computers, a problem to be solved, even a success to be applauded (given how wonderfully our therapists are doing) - but no longer JUST Jamesy, who, you know, we know he's somewhere on the spectrum, but we're not sure what's up, and hey, did you see he puts his arms in his shirt all by himself now? And watch him draw a face - he adds hair! And ears!
*siiiigh*
Clearly, this post needs to end like this:
In't he cute?
And we have team consensus!
James is adorable, we all think. (So wise, these therapists.) And a conundrum. Behaviorally, he's... definitely something... but... what?
He picks up new skills like a sponge. He will now point to things in books, wave bye-bye sometimes, sign "more" a LOT, and has several times strung two words or word/signs together: most famously when he had just generally HAD it with being dragged around WalMart, and specifically HAD IT with his idiot mother, who kept cooing maternal inanities at him but who is - as he so clearly pointed out when he was finally pushed past all the limits of reasonable endurance, and was forced to shout, with great emphasis, "MO BAH!" in her face to get a damn drink - a bit dim in the what-to-do-to-solve-this-problem department.
Dear gods, was that even a sentence?
Anyway. He uses his fork with very little reminding, and is getting better with spoons. (Meaning, they stay in his hands, and sometimes even have food on them. Hey, it's an improvement!) He is getting pretty good at drinking from cups, although heaven help the fool who tries to pry his BAH out of his hands in the morning. He stacks blocks with reckless abandon, and will sometimes help you put things away. He rarely rocks or flaps these days. He never has a real tantrum, and has none of the rigidity about textures, schedules, light, noise, temperatures, or ANYTHING that is commonly associated with autism (or even his siblings)... and yet... he's just not... there's something... he doesn't...
Shit. No one knows. None of us! We all agree he's crazy-bright and sunshine-smiley and funny as hell when he giggles, which is often, and he does eye-contact and loves snuggles and what the hell do we CALL this?
So tomorrow, the long-awaited appointment with the Developmental Pediatrician. ::cue booming reverb echo:: - trician - trician -trician...
.. and supposedly, we will come out with a diagnosis. A DIAGNOSIS -osis - osis.
A diagnosis will enable me to, among other things, get him Social Security benefits, and assist me in procuring any and all services I might desire to get him, should any problems in doing so ever come up.
Which is good, right?
Right??
So, while I should be sleeping, and despite having missed a gajillion posts between then and this, I am instead feeling very put-upon by the imminent application of a label - a label I WANT, mind you, a USEFUL label - to my baby.
I know what it will be. (Jump back, Nostradamus, Momma bear is in dah HOUSE!) It will be PDD-NOS. You watch.
Why? Because N-O-S stands for "not otherwise specified", and if ever there was a kid with a pervasive developmental disorder that couldn't be specified, lawdy, this one's it.
The good doctor has been in business for 37 years doing this. She is, coincidentally, in the place I consider my spiritual home, my touchstone, where I go to recharge: Woodstock. She comes so highly recommended that it took me months to get in to see her, and I am getting up before fricking roosters to drive up there (2+ hours) just to let her ask me all the same questions I answered when I filled out the MASSIVE application (application?!) for the appointment - you remember. The one I slyly (Oh, Mom, you're so clever! How DO you do it?) put his picture on top of, so she wouldn't forget he's a somebody, not just a pile of reports, or a bunch of behaviors, or a label.
A label.
By this time tomorrow, we will have a label, and my Jamesy will be, once and for all, irrevocably, an autistic statistic. A tick on a graph. One of the crowd. A file folder in someone's office and a bunch of reports on some computers, a problem to be solved, even a success to be applauded (given how wonderfully our therapists are doing) - but no longer JUST Jamesy, who, you know, we know he's somewhere on the spectrum, but we're not sure what's up, and hey, did you see he puts his arms in his shirt all by himself now? And watch him draw a face - he adds hair! And ears!
*siiiigh*
Clearly, this post needs to end like this:
In't he cute?
Wednesday, June 9, 2010
BEST. DAY. EVER!
Holy crap! It's been almost a month of me saying "tomorrow, I swear I'll blog tomorrow.." - and I have about 5 half-written posts I could bore you with (and will!) - and SO much has happened, from moving to switching Speech Paths to getting an OT to, oh,jeez, all kinds of silliness...
...but...
JAMES SAID "MORE"!!
Perfectly clearly, while signing it, asking for fruit chews!
YYYYIIIIPPPPPPPPEEEEEE!!!
My non-verbal son SPOKE TO ME. SPOKE TO ME.
And for those of you somehow not grasping the miraculousness of this, it means he can.
He. Can. Talk.
DAMN RIGHT HE CAN!
...but...
JAMES SAID "MORE"!!
Perfectly clearly, while signing it, asking for fruit chews!
YYYYIIIIPPPPPPPPEEEEEE!!!
My non-verbal son SPOKE TO ME. SPOKE TO ME.
And for those of you somehow not grasping the miraculousness of this, it means he can.
He. Can. Talk.
DAMN RIGHT HE CAN!
Thursday, May 13, 2010
No, seriously
This is what we've been doing since the last healthy post, however many millions of years ago that was.
There have been occurrences that only involved chicken soup (which we've had for dinner all week) and sneezing and coughing and body fluids peripherally... I think... maybe?
But then again, maybe not.
Today, our beloved special skills therapist showed up. Apparently she had called on Monday to reschedule to today because SHE was sick. I was at a doctor's appointment at the time, making sure the 2 boys had not caught the Devil's strep throat and other creeping crud, and although I vaguely recall being told she had canceled, I'm morally certain I didn't know she was coming today, because SHE WAS NOT ON THE CALENDAR. And as we all know, if it is NOT ON THE CALENDAR, it is NOT HAPPENING IN THIS HOUSE.
Fortunately, after one look at James zonked on the couch, a lovely view of the Devil's Coxsackie tongue and Herpe finger (What? It's only one finger!) through the screen door (sensible woman), and a brief appraisal of my unwashed, unbrushed hair and pajamas-as-daywear look, she was happy to reschedule to next week, and hightail it down the front walk while her immune system was relatively intact.
I'd be concerned about whether she'll ever be
Uh huh.
I know it.
I - what were we talking about it? Naps?
ON IT!
Sunday, May 9, 2010
Hold, Please
This blog has been interrupted by an outbreak of strep/flu/wild Botswanian Monkey rash that has rendered your faithful blogger even more insensate than usual.
A blog entry WAS, in fact, in progress on Friday, but unfortunately your faithful blogger was swept away in a mucus tsunami (You think it sounds bad? Try swimming in it!) and has only just been washed up on Strep Beach. The Devil With a Used Box of Tissues is with her, and they think they see Jamesy and Number One Son on the horizon, making gamely for shore by aiming themselves at land and coughing repeatedly.
We will rejoin Friday's blog, already in progress, when the meds have kicked in sufficiently to ensure an actual command of the English language, and an attention span to go with it.
Until then...
NAP TIME!!!
A blog entry WAS, in fact, in progress on Friday, but unfortunately your faithful blogger was swept away in a mucus tsunami (You think it sounds bad? Try swimming in it!) and has only just been washed up on Strep Beach. The Devil With a Used Box of Tissues is with her, and they think they see Jamesy and Number One Son on the horizon, making gamely for shore by aiming themselves at land and coughing repeatedly.
We will rejoin Friday's blog, already in progress, when the meds have kicked in sufficiently to ensure an actual command of the English language, and an attention span to go with it.
Until then...
NAP TIME!!!
Tuesday, May 4, 2010
DISCLAIMER: This isn't actually about James
...but I DO mention him. Does that count?
I am hereby exercising my editorial right to hijack my own blog for the purpose of venting, thereby preventing the premature death and/or dismemberment of any number of my cohabitants here in this ever-shrinking space we call "how long till we can move?"
So. Had a nice day. Karen came, did special skills therapy with James (<--- MENTION! See it? Right there. AND details. So I'm not so bad after all. Well... until you read the rest...) And I got a play table that has been mine since childhood repainted for my daughter (because the Devil insists on fresh paint, dontcha know), and my house is as clean as it is ever going to be until I no longer inhabit it.
(WANT. TO. MOVE. NOWWWWWWWWW!!!!)
We had some nifty weird thunderstorm-ish weather that looked like it was going to be a lot worse than it was, and then a beautiful sunset, and a fine dinner prepared...
..and then Number One Son announced that he didn't feel well. Now, I am Mommy, hear me go into denial - and I am wily to the ways of 8-yr-olds presented with unwanted peas and pork chops. So he was instructed to sit down anyway, and sip his drink, and "see how he felt". He declined to eat. He asked if he could go to bed. HE TURNED DOWN A POPSICLE. Either the kid has developed a mean poker face, or he's genuinely ill.
Now while this was going on, Jamesy and the Devil were in their chairs, and Jamesy was merely picking at his food, as well. I don't know if his ear has cleared up or not, but he began whining in a way that I associate with him being in distress of some sort (versus merely being ticked off at the crappy service in this restaurant, for instance, or the quality of the news reporting on Fox), so he was dosed with children's Tylenol (GENERIC, forgawdsakes, yes I know about the recall, calm yourselves!) and finally, he nodded off in his chair.
While I tended to Number One's various needs - ginger ale, a pot in his bed (don't ask) and could he have a snuggle? - Dad was left with a James who would rouse himself long enough to cry piteously, then eventually fall back into a fitful sleep that HAD to occur on Dad or else woe unto us all. (The same Jamesy, I would like to add, who is currently jumping on the couch, giggling, and jabbering at Kai Lan. Apparently, a full recovery has been made.)
And then came American Idol.
(Here comes the real point of this post. Those with weak stomachs or who expect any discretion whatsoever in their blogger's TV viewing habits should stop reading here.)
Yes, yes, I'm pathetic and pitiable and quite possibly contemptible and almost certainly utterly bereft of taste but, dammit, I LIKE Idol. I particularly like Big Mike, and if the truth is to be told (and it IS, oh baby, IT IS), I have been waiting all week to watch his performance tonight. Granted, it's 3 minutes of pure cheese, but...
... it's 3 minutes I missed.
3 fripping minutes out of an ENTIRE FLIPPING WEEK and, no, sorry, you must be too busy catering to loud small people who fall miraculously silent ONE BRAIN-FRYING SECOND after the performance ends!
Did they cry over the judges' endless blather? (Sorry, Ellen; I promise yours is the only stuff I care to hear. I meant THEM.) Negative.
Did they cry during the wretched filler interlude with Frank Sinatra's relatives? Of course not.
Did they, in fact, make any noise whatsoever during ANY OTHER PERFORMANCE? No. No, they did not.
And so, I find myself in the ludicrous position of being PISSED (no, I mean P.I.S.S.E.D PISSED) with my beloved offspring - who are small and helpless and possibly plague-bearing, let us recall - because I missed a performance which, let's face it, who cares? And also, have you never heard of Hulu? The interwebz? BING?? It's not like I can't see the damn performance in about 354 million places the nanosecond it's done airing; but I am bent all to shit because I missed Michael singiiiiing *whine* and why can't I eeeevvver have a minute for meeeeee *bitchmoan* and oh it's so unfaaaaiiiir *teen angst flashback*
So.. um.. yeah. I had to confess. Thank you all for bearing witness to my depravity. Clearly I should be immediately taken away from my children (for their safety!) and put someplace quiet. Preferably someplace with a hot tub, blender full of margaritas, and scantily-clad serving boy with epic abs. For therapeutic purposes, of course.
What? What??
I am hereby exercising my editorial right to hijack my own blog for the purpose of venting, thereby preventing the premature death and/or dismemberment of any number of my cohabitants here in this ever-shrinking space we call "how long till we can move?"
So. Had a nice day. Karen came, did special skills therapy with James (<--- MENTION! See it? Right there. AND details. So I'm not so bad after all. Well... until you read the rest...) And I got a play table that has been mine since childhood repainted for my daughter (because the Devil insists on fresh paint, dontcha know), and my house is as clean as it is ever going to be until I no longer inhabit it.
(WANT. TO. MOVE. NOWWWWWWWWW!!!!)
We had some nifty weird thunderstorm-ish weather that looked like it was going to be a lot worse than it was, and then a beautiful sunset, and a fine dinner prepared...
..and then Number One Son announced that he didn't feel well. Now, I am Mommy, hear me go into denial - and I am wily to the ways of 8-yr-olds presented with unwanted peas and pork chops. So he was instructed to sit down anyway, and sip his drink, and "see how he felt". He declined to eat. He asked if he could go to bed. HE TURNED DOWN A POPSICLE. Either the kid has developed a mean poker face, or he's genuinely ill.
Now while this was going on, Jamesy and the Devil were in their chairs, and Jamesy was merely picking at his food, as well. I don't know if his ear has cleared up or not, but he began whining in a way that I associate with him being in distress of some sort (versus merely being ticked off at the crappy service in this restaurant, for instance, or the quality of the news reporting on Fox), so he was dosed with children's Tylenol (GENERIC, forgawdsakes, yes I know about the recall, calm yourselves!) and finally, he nodded off in his chair.
While I tended to Number One's various needs - ginger ale, a pot in his bed (don't ask) and could he have a snuggle? - Dad was left with a James who would rouse himself long enough to cry piteously, then eventually fall back into a fitful sleep that HAD to occur on Dad or else woe unto us all. (The same Jamesy, I would like to add, who is currently jumping on the couch, giggling, and jabbering at Kai Lan. Apparently, a full recovery has been made.)
And then came American Idol.
(Here comes the real point of this post. Those with weak stomachs or who expect any discretion whatsoever in their blogger's TV viewing habits should stop reading here.)
Yes, yes, I'm pathetic and pitiable and quite possibly contemptible and almost certainly utterly bereft of taste but, dammit, I LIKE Idol. I particularly like Big Mike, and if the truth is to be told (and it IS, oh baby, IT IS), I have been waiting all week to watch his performance tonight. Granted, it's 3 minutes of pure cheese, but...
... it's 3 minutes I missed.
3 fripping minutes out of an ENTIRE FLIPPING WEEK and, no, sorry, you must be too busy catering to loud small people who fall miraculously silent ONE BRAIN-FRYING SECOND after the performance ends!
Did they cry over the judges' endless blather? (Sorry, Ellen; I promise yours is the only stuff I care to hear. I meant THEM.) Negative.
Did they cry during the wretched filler interlude with Frank Sinatra's relatives? Of course not.
Did they, in fact, make any noise whatsoever during ANY OTHER PERFORMANCE? No. No, they did not.
And so, I find myself in the ludicrous position of being PISSED (no, I mean P.I.S.S.E.D PISSED) with my beloved offspring - who are small and helpless and possibly plague-bearing, let us recall - because I missed a performance which, let's face it, who cares? And also, have you never heard of Hulu? The interwebz? BING?? It's not like I can't see the damn performance in about 354 million places the nanosecond it's done airing; but I am bent all to shit because I missed Michael singiiiiing *whine* and why can't I eeeevvver have a minute for meeeeee *bitchmoan* and oh it's so unfaaaaiiiir *teen angst flashback*
So.. um.. yeah. I had to confess. Thank you all for bearing witness to my depravity. Clearly I should be immediately taken away from my children (for their safety!) and put someplace quiet. Preferably someplace with a hot tub, blender full of margaritas, and scantily-clad serving boy with epic abs. For therapeutic purposes, of course.
What? What??
Monday, May 3, 2010
Kites and Kiddie Pools and Pals, O My!
My, what a lovely weekend we had.
Seriously.
Sunshine in abundance on Saturday, a kite festival at which James not only held the kite string (well, for a second or two, anyway), but also ate and drank and ran around and PLAYED CATCH WITH US (<--- See those caps? They mean possible milestone alert!) with an inflatable beachball and giggled and scampered and generally had a blast. Wheee!
And then Sunday, we had chillin' in the new kiddie pool, and despite the fact that if you so much as touch his feet to bathwater, he shrieks like you're dipping him in lava, he got in that pool voluntarily and stomped and sloshed and played and didn't even make a peep when his sister 'mistakenly' (this is the Devil, after all) got him in the face with a full cup of water. In point of fact, after a long pause after which we expected to hear air-raid siren-quality howling, he instead simply licked the water drips off his nose, grinned, and went about his splashy business. Much fun had by all!
Which is good, because this scheduling evals and therapists in between earaches (his), pediatricians (theirs), and dentists (ours) grows tedious already. And of course, when not blathering on nonsensically to one blog or another, I have also become one of THOSE people... You know the ones: I sit at the computer, scouring Google (and now Bing) for autism links, alternately finding myself all superior and dismissive and HAH!-I-already-knew-so-much-more-about-this-than-you,-and-I-don't-even HAVE-an-autism-website,-what's-wrong-with-you?? and then also overwhelmed and confused and panicked and worried about not happening to find the exact right combo of therapies for my non-verbal but otherwise quite bright and engaged child and dooming him to an adulthood of sub-par group home life because I'm old and stoopid and feeling a tad incoherent myself these days and I can't Google properly or even stop a run-on sentence and, oh hey! Squirrel!
Yeah.
One of them.
So the good news is, I have the coolest, most knowledgeable, supportive, wonderful group of friends EVER. Some are fellow moms, some have special needs kids, some are professionals in the field, some are just smart and concerned and funny, and all of them are keeping me - hey, I almost said "sane"! HAH! I'm such a kidder, I slay myself - focused and able to get up every day psyched to have another day with my beautiful Jamesy and to handle whatever that entails.
So, as they say in my beloved Wayne's World, I say to you all:
I love you, man!
I have no idea what this road will look like when I look back on it in 20 years, but I damn sure know who will have been on it with me. Thank you.
Seriously.
Sunshine in abundance on Saturday, a kite festival at which James not only held the kite string (well, for a second or two, anyway), but also ate and drank and ran around and PLAYED CATCH WITH US (<--- See those caps? They mean possible milestone alert!) with an inflatable beachball and giggled and scampered and generally had a blast. Wheee!
And then Sunday, we had chillin' in the new kiddie pool, and despite the fact that if you so much as touch his feet to bathwater, he shrieks like you're dipping him in lava, he got in that pool voluntarily and stomped and sloshed and played and didn't even make a peep when his sister 'mistakenly' (this is the Devil, after all) got him in the face with a full cup of water. In point of fact, after a long pause after which we expected to hear air-raid siren-quality howling, he instead simply licked the water drips off his nose, grinned, and went about his splashy business. Much fun had by all!
Which is good, because this scheduling evals and therapists in between earaches (his), pediatricians (theirs), and dentists (ours) grows tedious already. And of course, when not blathering on nonsensically to one blog or another, I have also become one of THOSE people... You know the ones: I sit at the computer, scouring Google (and now Bing) for autism links, alternately finding myself all superior and dismissive and HAH!-I-already-knew-so-much-more-about-this-than-you,-and-I-don't-even HAVE-an-autism-website,-what's-wrong-with-you?? and then also overwhelmed and confused and panicked and worried about not happening to find the exact right combo of therapies for my non-verbal but otherwise quite bright and engaged child and dooming him to an adulthood of sub-par group home life because I'm old and stoopid and feeling a tad incoherent myself these days and I can't Google properly or even stop a run-on sentence and, oh hey! Squirrel!
Yeah.
One of them.
So the good news is, I have the coolest, most knowledgeable, supportive, wonderful group of friends EVER. Some are fellow moms, some have special needs kids, some are professionals in the field, some are just smart and concerned and funny, and all of them are keeping me - hey, I almost said "sane"! HAH! I'm such a kidder, I slay myself - focused and able to get up every day psyched to have another day with my beautiful Jamesy and to handle whatever that entails.
So, as they say in my beloved Wayne's World, I say to you all:
I love you, man!
I have no idea what this road will look like when I look back on it in 20 years, but I damn sure know who will have been on it with me. Thank you.
Thursday, April 29, 2010
This Is the Blog That Never Ends...
So no posts recently because in my head, I keep saying the same things over and over and over, and I've bored MYSELF so thoroughly that I'm afraid of the lawsuits that will arise if I pour it all out onto a blog page and send innocent readers into comas.
You would think, perhaps, that since I am now here, something of note had occurred, but OH! How wrong you would be!
However, on the off-chance that someone reads this stuff and actually finds it useful to know that somewhere out there in the great Blogiverse, another parent is indeed mired in the same mental muck at this point on their journey down the autism diagnosis road, I give you the word that has taken over my life:
Paperwork.
Jesus gawdamighty, the PAPERWORK!
Now my faithful reader will know that I come from a group home background, professionally, so I am wily to the ways of forms and paper trails and documentation, O my! Even so, I am perilously close to overwhelmed by the sheer number of things to keep track of - and so, I have done what any good direct care staff person does: I made a binder.
I modeled it on the one suggested on the Autism Speaks website, in their MOST EXCELLENT 100 Day Plan, and in the course of a week, I can already tell you that in the event of a house fire, if the cat doesn't happen to be sitting directly on top of it as I gather up stuff to save, he's on his own. It's that good. (And thanks to my friend Corrine for pointing me to it!)
So now, I have a place to write down every service provider's name and info, every contact I make inquiring about something, and what follow-up it requires, and when. All Jamesy's medical reports, from immunizations to audiology screens to neuro (when we finally get it done), have a section, so I can easily lay my hands on them to make copies when I apply for the next round of whatevers. IFSPs. Evals. General correspondence. Schedules.
I added a monthly calendar section so I can see his schedule at a glance when arranging the no-fewer-than SEVEN therapy/eval appointments he is up to weekly, and then a second, separate one (stored in the clear plastic sleeve on the cover) to which I add not only HIS stuff, but all the rest of our dentist, school, pediatrician, etc appointments, so I can fail to overlap by mistake.
I have copies of all his insurance cards, and a wallet-size photo of him, and a prescription from his regular pediatrician to the developmental pediatrician. (All of these because they were required when applying for an appointment with the developmental pediatrician [APPLYING. APPLYING?! WTF??] and it seemed like a good idea to have them on hand since no doubt someone else will eventually want them too.)
Also, A nefarious subliminal trick occurred to me when getting the THIRTY PAGES of supporting documentation together for that application: His picture
goes on top.
I realize you need to know his history, and we're only doing this so we can address all his tics and 'special' behaviors... but don't forget for ONE SECOND that this is my KID, dammit. He has a face - see it? Innit cute?
And if I have to shuffle 80 godzillion papers to get you to even consider him, you can damn well remember who you're reading about when you look through them!
Whew!
Sorry. My temper got away from me there for a sec.
So, anyway... yeah. Paperwork. It's making me nuts. More nuts. Contributing to the overall nuts factor. Aw, nuts!
I hate it, but it seems it will be one of the defining factors of this journey, so here I am, mom-ninja with binder-chuks, ready to battle it head on or assault it, all stealthy-like, under cover of darkness and tequila. Er... darkness.
More from the trenches after Ed, the OT eval guy, leaves us later tonight!
You would think, perhaps, that since I am now here, something of note had occurred, but OH! How wrong you would be!
However, on the off-chance that someone reads this stuff and actually finds it useful to know that somewhere out there in the great Blogiverse, another parent is indeed mired in the same mental muck at this point on their journey down the autism diagnosis road, I give you the word that has taken over my life:
Paperwork.
Jesus gawdamighty, the PAPERWORK!
Now my faithful reader will know that I come from a group home background, professionally, so I am wily to the ways of forms and paper trails and documentation, O my! Even so, I am perilously close to overwhelmed by the sheer number of things to keep track of - and so, I have done what any good direct care staff person does: I made a binder.
I modeled it on the one suggested on the Autism Speaks website, in their MOST EXCELLENT 100 Day Plan, and in the course of a week, I can already tell you that in the event of a house fire, if the cat doesn't happen to be sitting directly on top of it as I gather up stuff to save, he's on his own. It's that good. (And thanks to my friend Corrine for pointing me to it!)
So now, I have a place to write down every service provider's name and info, every contact I make inquiring about something, and what follow-up it requires, and when. All Jamesy's medical reports, from immunizations to audiology screens to neuro (when we finally get it done), have a section, so I can easily lay my hands on them to make copies when I apply for the next round of whatevers. IFSPs. Evals. General correspondence. Schedules.
I added a monthly calendar section so I can see his schedule at a glance when arranging the no-fewer-than SEVEN therapy/eval appointments he is up to weekly, and then a second, separate one (stored in the clear plastic sleeve on the cover) to which I add not only HIS stuff, but all the rest of our dentist, school, pediatrician, etc appointments, so I can fail to overlap by mistake.
I have copies of all his insurance cards, and a wallet-size photo of him, and a prescription from his regular pediatrician to the developmental pediatrician. (All of these because they were required when applying for an appointment with the developmental pediatrician [APPLYING. APPLYING?! WTF??] and it seemed like a good idea to have them on hand since no doubt someone else will eventually want them too.)
Also, A nefarious subliminal trick occurred to me when getting the THIRTY PAGES of supporting documentation together for that application: His picture
goes on top.
I realize you need to know his history, and we're only doing this so we can address all his tics and 'special' behaviors... but don't forget for ONE SECOND that this is my KID, dammit. He has a face - see it? Innit cute?
And if I have to shuffle 80 godzillion papers to get you to even consider him, you can damn well remember who you're reading about when you look through them!
Whew!
Sorry. My temper got away from me there for a sec.
So, anyway... yeah. Paperwork. It's making me nuts. More nuts. Contributing to the overall nuts factor. Aw, nuts!
I hate it, but it seems it will be one of the defining factors of this journey, so here I am, mom-ninja with binder-chuks, ready to battle it head on or assault it, all stealthy-like, under cover of darkness and tequila. Er... darkness.
More from the trenches after Ed, the OT eval guy, leaves us later tonight!
Tuesday, April 20, 2010
A Love Song to My Former Life
Autistics can't absorb minerals - supplement them.
WAIT! Don't over-supplement.
Autism is cured/helped/mitigated by taking doses of fish oil.
Be careful of heavy metals in fish oil. Better not use it.
Make sure he gets his vitamins.
DON'T OVER SUPPLEMENT, I SAID!
Cut back on dairy; it makes Autistics crazed like squirrels on Starbucks. (Okay, that was my paraphrase.)
Try milk substitutes, like soy milk.
Don't use soy! It's worse than catnip for Autistic cats. (Kids. Whatever.)
Watch out for glutens. (AAAAUUUGH!! Attack of the killer bagel!!!)
Dare I say it - vaccinations? (Too late! He got his. Probably I'm a criminal or something as a result.)
Autism is connected to the digestive system.
Autism is neurological.
Autism is physical.
Autism can be improved by stimulating certain parts of the body, like the "pointer" toe for language centers.
There IS no "autism". (There is only Zuul?)
Feldenkrais! (Gesundheit!)
*sigh*
So these are all the things I was told just in the past two days.
It is a very VERY good thing that I am a) stubborn like a mofo and b) have had some experience in this field because let me tell you, if I were a parent fresh off the diagnosis train faced with all the conflicting info out there, my head would explode. Then we could add
Autism causes insanity!
and also
Autism creates fatal explosive inter-cranial pressure! (Wait till THAT one circles the interwebz, o boy!)
So let me stop here and say that both Jeff, the psych therapist (who was also one of the people who did the initial evals) and Bethany, the speech therapist, were lovely people, and connected very well with James. This is not particularly hard to do, since he pretty much likes everyone, and isn't one of those kids that freaks the hell out when he's pushed out of his comfort zone (Bethany was able to pick him up and snuggle him with nothing but grins in response after intentionally frustrating him to see what kind of verbalizations he would make, and Jeff had him laughing like a loon). However, it was nice to see his easy-going nature confirmed.
Both therapists used the first session mainly as a getting-to-know you time, although Jeff less so because he had already met Jamesy. Both agree that he is super-intelligent, and super-stubborn (we're calling it "inner-directed"). Both want to up their therapy from once to twice a week. (The state mandates that they start at once.) Both are encouraging, upbeat, and clearly charmed by the curly-headed rascal they are charged with helping. Both came armed with various toys, plunked themselves down on the living room floor with them, let Jamesy come to them and choose things, did lots of mimicry as they played, and were willing to let him stop to draw, which is one of his favorite things.
Overall, no complaints (besides my general unhappiness with having to do any of this in the first place, obviously). However...
... Bethany has an autistic daughter, age 6. Because Bethany has had some success with various dietary modifications, and claims that her daughter (who stopped talking at age 2) has now begun speaking again due to her Feldenkrais involvement, she is chock full o' what I am now going to call "Things You Should Absolutely Positively Do For Your Autistic Kid Unless You Shouldn't, In Which Case Nevermind But Please Take All My Advice Anyway" (instead of calling it "the usual bullshit", which while more apt, is less descriptive.)
Now if you've done any reading at ALL about autism (or seen a news report, or spoken to anyone anyplace anytime ever), you will know that no one knows what it even IS (there is no single, coherent definition), much less what causes it, or how to cure it. Certainly, some children have benefited from each of the various approaches, which I have no doubt were the brainchildren of some frustrated parents grasping for something, ANYTHING to help their kid. But if there were a therapy which worked every time, guaranteed - or even MOST of the time - people would be lined up from here to the moon to get in on it. So while I am not necessarily dismissing ANY of the approaches mentioned - or any of the 40 gadzillion I will no doubt hear in the future - I would like to take a moment to be grateful that I was in the field long enough to know to take what I hear with a grain of salt. (ACK! NO SALT!)
And meanwhile, we have so far been pleasantly surprised by the quality of the interactions with Jamesy and his therapists - and that, in the end, is all that matters.
[And before you ask, Mo... MS, CCC-SLP, TSHH. Iz gud?]
WAIT! Don't over-supplement.
Autism is cured/helped/mitigated by taking doses of fish oil.
Be careful of heavy metals in fish oil. Better not use it.
Make sure he gets his vitamins.
DON'T OVER SUPPLEMENT, I SAID!
Cut back on dairy; it makes Autistics crazed like squirrels on Starbucks. (Okay, that was my paraphrase.)
Try milk substitutes, like soy milk.
Don't use soy! It's worse than catnip for Autistic cats. (Kids. Whatever.)
Watch out for glutens. (AAAAUUUGH!! Attack of the killer bagel!!!)
Dare I say it - vaccinations? (Too late! He got his. Probably I'm a criminal or something as a result.)
Autism is connected to the digestive system.
Autism is neurological.
Autism is physical.
Autism can be improved by stimulating certain parts of the body, like the "pointer" toe for language centers.
There IS no "autism". (There is only Zuul?)
Feldenkrais! (Gesundheit!)
*sigh*
So these are all the things I was told just in the past two days.
It is a very VERY good thing that I am a) stubborn like a mofo and b) have had some experience in this field because let me tell you, if I were a parent fresh off the diagnosis train faced with all the conflicting info out there, my head would explode. Then we could add
Autism causes insanity!
and also
Autism creates fatal explosive inter-cranial pressure! (Wait till THAT one circles the interwebz, o boy!)
So let me stop here and say that both Jeff, the psych therapist (who was also one of the people who did the initial evals) and Bethany, the speech therapist, were lovely people, and connected very well with James. This is not particularly hard to do, since he pretty much likes everyone, and isn't one of those kids that freaks the hell out when he's pushed out of his comfort zone (Bethany was able to pick him up and snuggle him with nothing but grins in response after intentionally frustrating him to see what kind of verbalizations he would make, and Jeff had him laughing like a loon). However, it was nice to see his easy-going nature confirmed.
Both therapists used the first session mainly as a getting-to-know you time, although Jeff less so because he had already met Jamesy. Both agree that he is super-intelligent, and super-stubborn (we're calling it "inner-directed"). Both want to up their therapy from once to twice a week. (The state mandates that they start at once.) Both are encouraging, upbeat, and clearly charmed by the curly-headed rascal they are charged with helping. Both came armed with various toys, plunked themselves down on the living room floor with them, let Jamesy come to them and choose things, did lots of mimicry as they played, and were willing to let him stop to draw, which is one of his favorite things.
Overall, no complaints (besides my general unhappiness with having to do any of this in the first place, obviously). However...
... Bethany has an autistic daughter, age 6. Because Bethany has had some success with various dietary modifications, and claims that her daughter (who stopped talking at age 2) has now begun speaking again due to her Feldenkrais involvement, she is chock full o' what I am now going to call "Things You Should Absolutely Positively Do For Your Autistic Kid Unless You Shouldn't, In Which Case Nevermind But Please Take All My Advice Anyway" (instead of calling it "the usual bullshit", which while more apt, is less descriptive.)
Now if you've done any reading at ALL about autism (or seen a news report, or spoken to anyone anyplace anytime ever), you will know that no one knows what it even IS (there is no single, coherent definition), much less what causes it, or how to cure it. Certainly, some children have benefited from each of the various approaches, which I have no doubt were the brainchildren of some frustrated parents grasping for something, ANYTHING to help their kid. But if there were a therapy which worked every time, guaranteed - or even MOST of the time - people would be lined up from here to the moon to get in on it. So while I am not necessarily dismissing ANY of the approaches mentioned - or any of the 40 gadzillion I will no doubt hear in the future - I would like to take a moment to be grateful that I was in the field long enough to know to take what I hear with a grain of salt. (ACK! NO SALT!)
And meanwhile, we have so far been pleasantly surprised by the quality of the interactions with Jamesy and his therapists - and that, in the end, is all that matters.
[And before you ask, Mo... MS, CCC-SLP, TSHH. Iz gud?]
Tuesday, April 13, 2010
Hypocrisy, Thy Name Is Peachy
I'm new at this, yeah?
Now, I have a long history (I won't go so far as to say "distinguished") working with folks of all ages with all kinds of developmental disabilities. If you had asked me, pre-James, whether I could handle such a thing were it to occur in my family... I'd have given you the exact answer I gave the geneticist who asked me that question when I was pregnant with the Devil and they were concerned she might have an issue due to my "Advanced Maternal Age" (read: you're old): "HELL yes, I can 'handle' it. Who better than me?"
Oh, sure.
I'm all about the person-centered-planning, baby. I like those objectives measurable and those goals attainable. I'm meeting you where you are and respecting choice. I got your significant deviations from the mean and your projected milestones and your self-stim and your sensory integration and your facilitated communication right freakin' here. I speak Clinician, yo. That's how I roll!
Riiight.
Except...
Can someone please tell me, as I continue on my freshly-launched campaign to ensure that the rest of the world never sees James as anything but the person he is,
how I stop measuring him against Autism? How do I stop noting, in my head, the 'normalness' (or lack thereof) of EVERY SINGLE THING this poor kid does?
Will it always have to be all about the disability?
Now, I have a long history (I won't go so far as to say "distinguished") working with folks of all ages with all kinds of developmental disabilities. If you had asked me, pre-James, whether I could handle such a thing were it to occur in my family... I'd have given you the exact answer I gave the geneticist who asked me that question when I was pregnant with the Devil and they were concerned she might have an issue due to my "Advanced Maternal Age" (read: you're old): "HELL yes, I can 'handle' it. Who better than me?"
Oh, sure.
I'm all about the person-centered-planning, baby. I like those objectives measurable and those goals attainable. I'm meeting you where you are and respecting choice. I got your significant deviations from the mean and your projected milestones and your self-stim and your sensory integration and your facilitated communication right freakin' here. I speak Clinician, yo. That's how I roll!
Riiight.
Except...
Can someone please tell me, as I continue on my freshly-launched campaign to ensure that the rest of the world never sees James as anything but the person he is,
how I stop measuring him against Autism? How do I stop noting, in my head, the 'normalness' (or lack thereof) of EVERY SINGLE THING this poor kid does? Will it always have to be all about the disability?
Tuesday, April 6, 2010
Tiny Boons
So I am on a mailing list for an absolutely hysterical guy from Britain, Mil Milhouse, and every so often he publishes a newsletter that is worth waiting for no matter how long it takes to arrive. (Go to his website, here: http://www.mil-millington.com/ when you are done with this blog. NOT BEFORE, or you'll never come back! You're welcome.)
Mil hates Facebook, but finally caved in and started a page called "Tiny Boons" wherein one may document those small but meaningful good things that happen during your day. (Before you get too worried about how sappy and nice that sounds, he means things like, say, finding out the chainsaw is out of gas when your demented girlfriend goes to start it up to hack away at you with it. You know - nice little things like that.) Well, today's blogtastic entry is going to ninja his name, and without remorse. Also, by the way, without the cynicism and hilarity, because, trust me, today is all about the sappy mommy moments!
:: insert pause for fetching of insulin for those with sugar issues ::
So, first: the Devil. She is sitting in her chair in the living room, watching Yo Gabba Gabba (Why, God, WHY!?! Oh, wait - she's the Devil. It all makes sense, in context...) quite contentedly and calls back to me over her shoulder, apropos of nothing, "Momma... I loves you. I loves you all day AND all night! You make my heart feel squishy."
Awww!
Now a funny (peculiar, not ha-ha) thing has been happening to me for a while, and I've been hyper-aware of it since the eval/Day-of-Formal-Official-Writing-Down-and-Confirmation-of-All-My-Worst-Fears-About-Jamesy, -O- CRAP!
To wit: whenever one of the other 2 kids does some preshuss thing, ahmahgawd, a little teeny bastard of a voice in my head wonders - in a horrible stage whisper - if Jamesy will ever be able to do the same thing. And while I of course dispatch the other 10-12 people living in my head over to knock the ever-lovin' crap out of the teeny bastard immediately (followed by the ghost of my grandmother, leveling Sicilian death-curses), it's always too late; the seed has been planted. A little tiny heart twinge. Not a heartBREAK, or anything, more like a little.. heartbruise. An owie.
HATE IT. (And am I the only one who does this?)
So of course, when the Devil goes all pink unicorns and fluffy kittens on me, the Teeny Bastard chimes in practically before the words are done leaving her lips. But today, o ho! Today! TODAY I WIN! Because...
Tiny Boon #1
Although usually a depressing little loop about whether I will ever enjoy such an utterance (or even hear my name) from James begins at this point, today..
JAMES SAID "MA MA".
For real. Looking at me. Over and over till I responded.
::trying to not jump up and down while I type::
SQUEEEEEEEEEEEEEEEEEEEEE!!
*ahem*
AND... (yes, AND!!!)...
Tiny Boon #2
... when I went dashing over to him in response, grinning like a lunatic...
HE SMILED BACK AT ME.
I even did an experiment, and made an exaggerated frowny-face at him while I had his full attention (to which he responded with a very serious look), and then smiled again and SO DID HE!!
Yeah, yeah, he'll probably never repeat it in front of anyone, especially not an evaluator, and yeah, it's not REALLY tiny, boon-wise, but it's my blog dammit and I can call it what I want because JAMESY SMILED AT ME AND CALLED ME MAMA!!
Woo hoo!
Mil hates Facebook, but finally caved in and started a page called "Tiny Boons" wherein one may document those small but meaningful good things that happen during your day. (Before you get too worried about how sappy and nice that sounds, he means things like, say, finding out the chainsaw is out of gas when your demented girlfriend goes to start it up to hack away at you with it. You know - nice little things like that.) Well, today's blogtastic entry is going to ninja his name, and without remorse. Also, by the way, without the cynicism and hilarity, because, trust me, today is all about the sappy mommy moments!
:: insert pause for fetching of insulin for those with sugar issues ::
So, first: the Devil. She is sitting in her chair in the living room, watching Yo Gabba Gabba (Why, God, WHY!?! Oh, wait - she's the Devil. It all makes sense, in context...) quite contentedly and calls back to me over her shoulder, apropos of nothing, "Momma... I loves you. I loves you all day AND all night! You make my heart feel squishy."
Awww!
Now a funny (peculiar, not ha-ha) thing has been happening to me for a while, and I've been hyper-aware of it since the eval/Day-of-Formal-Official-Writing-Down-and-Confirmation-of-All-My-Worst-Fears-About-Jamesy, -O- CRAP!
To wit: whenever one of the other 2 kids does some preshuss thing, ahmahgawd, a little teeny bastard of a voice in my head wonders - in a horrible stage whisper - if Jamesy will ever be able to do the same thing. And while I of course dispatch the other 10-12 people living in my head over to knock the ever-lovin' crap out of the teeny bastard immediately (followed by the ghost of my grandmother, leveling Sicilian death-curses), it's always too late; the seed has been planted. A little tiny heart twinge. Not a heartBREAK, or anything, more like a little.. heartbruise. An owie.
HATE IT. (And am I the only one who does this?)
So of course, when the Devil goes all pink unicorns and fluffy kittens on me, the Teeny Bastard chimes in practically before the words are done leaving her lips. But today, o ho! Today! TODAY I WIN! Because...
Tiny Boon #1
Although usually a depressing little loop about whether I will ever enjoy such an utterance (or even hear my name) from James begins at this point, today..
JAMES SAID "MA MA".
For real. Looking at me. Over and over till I responded.
::trying to not jump up and down while I type::
SQUEEEEEEEEEEEEEEEEEEEEE!!
*ahem*
AND... (yes, AND!!!)...
Tiny Boon #2
... when I went dashing over to him in response, grinning like a lunatic...
HE SMILED BACK AT ME.
I even did an experiment, and made an exaggerated frowny-face at him while I had his full attention (to which he responded with a very serious look), and then smiled again and SO DID HE!!
Yeah, yeah, he'll probably never repeat it in front of anyone, especially not an evaluator, and yeah, it's not REALLY tiny, boon-wise, but it's my blog dammit and I can call it what I want because JAMESY SMILED AT ME AND CALLED ME MAMA!!
Woo hoo!
Monday, April 5, 2010
Ode to a Breadstick
So James prefers his food small. He's not fussy about texture - he'll eat a chip, a yogurt, a banana, a chicken nugget, hot or cold, soft or crunchy, with equally reckless abandon - but he prefers the item in question to be cut or torn into pieces the size of, say, a candy corn. My personal theory is that since he inevitably crams as many of those small pieces into his mouth as humanly possible, he wants them that way to facilitate the plate-to-chipmunk-stuffed-mouth process. (His people have neither confirmed nor denied.)
One thing James does NOT like, however, is to be involved in the piece process. He prefers, thankyouverymuch, to have the staff present his comestibles pre-cut or torn, and if left with no other recourse but to take a chunk off of a spoon or fork proffered to him, he will take the item in its entirety rather than bite it into the size piece he prefers.
So the other day, the weather finally turned nice, and we embarked on one of the most dreaded quests known to mankind: Family Day Out. (Yes, there is a logical flow to this subject change. I promise.)
That's right... we all piled into the mini-van (respectfully known as the short bus around here), and headed out on an hour+ drive to Woodstock for a day of playground, woods-walks, fine food-eatery, and an assault of the mall up there, which has better stuff than ours. (Stuff = good.) There was the obligatory impromptu picnic at McDonald's when we discovered we were all starving to death and unlikely to complete the trip without immediate nugget-based nourishment, and then we arrived in Woodstock and had a spectacular good time on swings and extra-tall swirly slides (the Devil's big accomplishment) and see-saws and playing in gigantic piles of dirt (James) and somehow getting co-opted by a local t-ball team and playing a game with them (Number One.) We wandered down to one of our favorite local food establishments late in the afternoon only to find it disappointingly changed, and consoled ourselved with a leisurely meander through Target, where we acquired a kiddie pool of epic scale, and a hose to fill it with. (Hooray! Stuff!) We found the Mr. Smoothie and had frozen concoctions. We made out like bandits in the Old Navy clearance section. We spent quarters on silly rides. Life, in short, was good. No one cried. No one threw up. There was even a marked lack of whining!
And were we content with this? Did we say to ourselves, "Selves, this has been a day of lovely weather, and a remarkable failure to tantrum on anyone's part... let us away homeward before the enchantment ends?"
No. No, we did not.
Flying in the face of convention and our budget, we instead called Number One's Dad & his girlfriend, and demanded that they come have dinner with us at the local diner - to which establishment we had not been since James was about 6 months old, despite having been serious regulars before that. (They make a MEAN burger at the Liberty Diner, let me tell you...) They agreed (FOOLS!) and we all met up and received one of the warmest greetings I've ever gotten from anyone from the staff, were ushered with much fanfare to a table in our regular waitress' station, and treated like royalty for the night.
So, what a wonderful day! Amazing happiness and delightful sunshine and family bonding and stellar service, yippee! And then... IT happened.
James, who had been entertaining himself with crayons (thank you, waitress Sue) and the back of his paper placemat, reached for a breadstick his sister was about to eat. In a moment of utter parental perversity, we didn't interfere. With infinite deliberation, he grasped it firmly, slowly brought it toward his face, held it up to his eyes for a more thorough inspection, and then, in what can only be labeled an Easter miracle... took a bite.
And chewed it up. And swallowed it.
And then took ANOTHER bite.
You all can keep your screaming 2-year old maniacs and shouting senior citizens who happily inhabit the other diner tables... my kid took a real bite and ate it :)
One thing James does NOT like, however, is to be involved in the piece process. He prefers, thankyouverymuch, to have the staff present his comestibles pre-cut or torn, and if left with no other recourse but to take a chunk off of a spoon or fork proffered to him, he will take the item in its entirety rather than bite it into the size piece he prefers.
So the other day, the weather finally turned nice, and we embarked on one of the most dreaded quests known to mankind: Family Day Out. (Yes, there is a logical flow to this subject change. I promise.)
That's right... we all piled into the mini-van (respectfully known as the short bus around here), and headed out on an hour+ drive to Woodstock for a day of playground, woods-walks, fine food-eatery, and an assault of the mall up there, which has better stuff than ours. (Stuff = good.) There was the obligatory impromptu picnic at McDonald's when we discovered we were all starving to death and unlikely to complete the trip without immediate nugget-based nourishment, and then we arrived in Woodstock and had a spectacular good time on swings and extra-tall swirly slides (the Devil's big accomplishment) and see-saws and playing in gigantic piles of dirt (James) and somehow getting co-opted by a local t-ball team and playing a game with them (Number One.) We wandered down to one of our favorite local food establishments late in the afternoon only to find it disappointingly changed, and consoled ourselved with a leisurely meander through Target, where we acquired a kiddie pool of epic scale, and a hose to fill it with. (Hooray! Stuff!) We found the Mr. Smoothie and had frozen concoctions. We made out like bandits in the Old Navy clearance section. We spent quarters on silly rides. Life, in short, was good. No one cried. No one threw up. There was even a marked lack of whining!
And were we content with this? Did we say to ourselves, "Selves, this has been a day of lovely weather, and a remarkable failure to tantrum on anyone's part... let us away homeward before the enchantment ends?"
No. No, we did not.
Flying in the face of convention and our budget, we instead called Number One's Dad & his girlfriend, and demanded that they come have dinner with us at the local diner - to which establishment we had not been since James was about 6 months old, despite having been serious regulars before that. (They make a MEAN burger at the Liberty Diner, let me tell you...) They agreed (FOOLS!) and we all met up and received one of the warmest greetings I've ever gotten from anyone from the staff, were ushered with much fanfare to a table in our regular waitress' station, and treated like royalty for the night.
So, what a wonderful day! Amazing happiness and delightful sunshine and family bonding and stellar service, yippee! And then... IT happened.
James, who had been entertaining himself with crayons (thank you, waitress Sue) and the back of his paper placemat, reached for a breadstick his sister was about to eat. In a moment of utter parental perversity, we didn't interfere. With infinite deliberation, he grasped it firmly, slowly brought it toward his face, held it up to his eyes for a more thorough inspection, and then, in what can only be labeled an Easter miracle... took a bite.
And chewed it up. And swallowed it.
And then took ANOTHER bite.
You all can keep your screaming 2-year old maniacs and shouting senior citizens who happily inhabit the other diner tables... my kid took a real bite and ate it :)
Thursday, April 1, 2010
His Name is James
This is my son. His name is James, he is just going on two, and he has some issues. We're working on them.
This blog is dedicated to him. It may not always be about him, precisely - he has a sister (The Devil in Pink Pajamas) who tends toward the dramatic already at age 3, and a brother (Number One Son) who is amazing and crazy creative in his own right, and a father and numerous relatives and, of course, a mother just this side (or was it that side?) of sane... and all of us tend to get into things that might seem blogworthy to me, so we might show up to take over from time to time. I make no guarantees. But today we had our very first Early Intervention Services evaluation, and James became, for the first in what I know will be a very long series of times, officially and on paper, developmentally delayed.
Obviously, I knew this, or they wouldn't have been in my house.
And, hey, I didn't spend 15 years of my life working with OTHER people's developmentally delayed children not to recognize one when he's sitting in my recliner flapping his hands and hooting like a barn owl on Starbucks because.. well, just because.
And may all the gods ever imagined or ever to be help the idiot who gets in my way as I get him every service available to help him become the best, happiest James he can be.
But most of all, gods help the person who forgets that at the end of the day, he is not a diagnosis, he is not a behavior, he is not a case, case number, or even an autistic (or whatever diagnosis they eventually settle on) child. He is James. A person. He has preferences. A sense of humor. He is wily and silly and snuggly and cranky and sleepy-eyed and patient with his dumb ole mom, who can't understand that "Ahhh" means "my feet are cold" while "Ahhhh" means "Hey lady, what do I have to do to get some food around here?! I'm freakin' starving over here! Can a guy get a chicken nugget??"
My son has a name. It is not autism, it is not special needs, and it is not developmental delay. They may be his forever like his big blue eyes and his finely-honed sense of merriment when he's naughty... but they are not HIM.
And I love him. With all of it.
So Jamesy... this one's for you, from Momma. And I swear I will see to it that one day you can read it.
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