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