That's how we had to frame our answers during LRHF's evaluation today. On the paperwork, anyway. Hard to squeeze or stretch a kid into that, but I guess we did.
Here's how I demonstrate understanding and mastery of the concept by applying it to a personally relevant situation:
1. I cried---a little
2. I slept last night---not at all
3. The diagnosis doesn't mean a thing between a LRHF and his mama---a lot
So there's more, of course, but it's been a very long and list-y day.
Monday, January 26, 2009
Friday, January 23, 2009
Monday, Monday ...
I do love the Mamas and the Papas. I think that album cover showed them piled in an old bathtub, John and Michelle Phillips, Danny something-or-other and Cass Elliot. Yes, an Album. It was my parents' album and I don't think I was even in school yet. I am quite old, but not that old.
So LRHF has his formal evaluation on Monday. I am terrified. I am 40% terrified that I will fall apart with such alacrity and drama that the evaluators will simply give each other the well, what can you expect look and click their tongues while they write out their reports. The remainder of my terror is simply that I do not know, and no one can tell me, how to hear how autistic my perfect baby is.
You know that there is the unspoken mommying stuff, and then there is the spoken, the written, the diagnosed mommying stuff. The two may well be the same and without surprise, but Oh Dear God, I am barely able to look on the first bit and would rather tear my eyes out that look on the second. I get how that sounds overly dramatic or stupid or nonsensical. I can see how that would be, but just the same, it is a very true thing.
Terrified. Maybe it's really more specifically dread, but "terrified" is the word that rears up in my brain and in my heart when I think about it, and I can't be bothered to stand on semantics just now.
And I realize that on Tuesday morning, he will still be my best and beautiful LRHF, my very, very precious joy, my love's pure light. I know that. I do.
It's just that right now my mommy heart is like that part of Genesis, that beginning part, in the beginning before God moved across the chaos and made light and dark and so forth. There is no reason, no logic, no understanding, but just all-burning ferocity and passion and angst. My lovely Justine gave me the Hebrew word for chaos, and while I cannot remember it, it sure sounded good.
Prayers or meditations or emoticons would be great, but I can't settle on the specifics of what would help. Maybe just that LRHF's Mommy remembers that He Will Benefit, even when She is Falling Apart. Maybe just that. Or that God will flicker across the chaos in that time and LRHF's mommy will be still and know that He is. That would be good too, I think.
No one is in bed yet, so it's too early to sit and muse and wallow. People need juice and chicken and baths and at least I'll be busy, right?
Maybe get my mind off of it.
Monday Monday,
can't trust that day.
Monday Monday,
sometimes it just turns out that way.
So LRHF has his formal evaluation on Monday. I am terrified. I am 40% terrified that I will fall apart with such alacrity and drama that the evaluators will simply give each other the well, what can you expect look and click their tongues while they write out their reports. The remainder of my terror is simply that I do not know, and no one can tell me, how to hear how autistic my perfect baby is.
You know that there is the unspoken mommying stuff, and then there is the spoken, the written, the diagnosed mommying stuff. The two may well be the same and without surprise, but Oh Dear God, I am barely able to look on the first bit and would rather tear my eyes out that look on the second. I get how that sounds overly dramatic or stupid or nonsensical. I can see how that would be, but just the same, it is a very true thing.
Terrified. Maybe it's really more specifically dread, but "terrified" is the word that rears up in my brain and in my heart when I think about it, and I can't be bothered to stand on semantics just now.
And I realize that on Tuesday morning, he will still be my best and beautiful LRHF, my very, very precious joy, my love's pure light. I know that. I do.
It's just that right now my mommy heart is like that part of Genesis, that beginning part, in the beginning before God moved across the chaos and made light and dark and so forth. There is no reason, no logic, no understanding, but just all-burning ferocity and passion and angst. My lovely Justine gave me the Hebrew word for chaos, and while I cannot remember it, it sure sounded good.
Prayers or meditations or emoticons would be great, but I can't settle on the specifics of what would help. Maybe just that LRHF's Mommy remembers that He Will Benefit, even when She is Falling Apart. Maybe just that. Or that God will flicker across the chaos in that time and LRHF's mommy will be still and know that He is. That would be good too, I think.
No one is in bed yet, so it's too early to sit and muse and wallow. People need juice and chicken and baths and at least I'll be busy, right?
Maybe get my mind off of it.
Monday Monday,
can't trust that day.
Monday Monday,
sometimes it just turns out that way.
Thursday, January 22, 2009
Please Disregard Yesterday
Am a huge howl-y weeping mess of mommy AGAIN today. No particular, or should I say new reason. Same old, Same old. Maybe hormones. I dunno.
Dun care.
Burst into tears as LRHF and I tumbled around giggling and tickling and nuzzling this afternoon. This is our favorite sport and sometimes his big ol' Irish Setter eyes will meet my tired just plain ol' eyes and he will say quite simply, "Happy Boy." I can tell you now that there are no three little words that will beat out those two big ones. Ever. But today I cried about it. Not too much, but enough to feel stupid.
So I feel like I might have given the wrong impression yesterday. Made you think I was moving along, getting it together and all that. I am not.
Not. Not. Not.
Not. Not.
Not.
Good damned thing I don't offer a money back guarantee.
Going to bed now.
Dun care.
Burst into tears as LRHF and I tumbled around giggling and tickling and nuzzling this afternoon. This is our favorite sport and sometimes his big ol' Irish Setter eyes will meet my tired just plain ol' eyes and he will say quite simply, "Happy Boy." I can tell you now that there are no three little words that will beat out those two big ones. Ever. But today I cried about it. Not too much, but enough to feel stupid.
So I feel like I might have given the wrong impression yesterday. Made you think I was moving along, getting it together and all that. I am not.
Not. Not. Not.
Not. Not.
Not.
Good damned thing I don't offer a money back guarantee.
Going to bed now.
Wednesday, January 21, 2009
"Look Where You're Going, Please."
I say that about a million-dillion times a day to my un-laced, un-hemmed, un-inhibited, unruled-by-gravity boys. "Don't fall down," I say. "You're not so clever that you won't trip."
And it's true. Proven time and time, boo-boo after boo-boo, howl after howl--they will fall if they don't properly assess the situation. If they jump or race or slide, small boys tend to go down hard.
Here's the thing I kinda sorta maybe slightly and completely against my will considered yesterday, tho, that has to do with that: Mommies are just the same. If we don't look, if we don't go the necessary route in the necessary fashion at the necessary speed, if we try to get around/go under/race past something, we, too will go down hard and howl.
Now, I did not get this flair for the obvious from my own vast wisdom, believe me. My dad (who, may I just say, is a whole 'nother book of tales and one that fits right on the family shelf, IF you get my meaning...) is trying very hard to fathom this autism thing--to carry it right along with my mother's illness and figure out why the hell they just don't make brains like they used to. And it's not his thing. Really not. From a very early age, we kids got that this man neither understood, nor enjoyed our presence, but what can you do? My point being that he's never been built for this sort of thing and now he's seventy and he's trying. I'm not saying we all didn't and don't pay for what he couldn't do, but same as before, what can you do? (where was I going with this? Oh...) So he calls and he's trying to be gentle (really really can count these times on one hand, but who's counting?) and he's trying to tell me how the situation could be worse. And while every atom and every particle and every fiber in my heart is howling at him because how the fxck could he even begin to...well, we needn't go there, but while there's all this drama in my silly self, something came out of my mouth clearly without the knowledge or consent of my brain. I swear, I did not have it in me until it came out my mouth. I swear. I said to him, "Dad, LRHF is fine. He's great. He's beautiful and happy. I am struggling. I am tired and angry. I am sad. He ( e.g., LRHF) could not be better. "
I know. Totally not me-ish. Please do sit down.
So I'm rolling this around now. I think that sometimes when God speaks to us and we just keep throwing our tantrums, He must get so bloody pissed that He just sort of slaps us. Shuts us up for a darn second so He can think a minute and so He doesn't have to watch us hyperventilate. I think, I hope that those words He so briefly put in my mouth were a slap like that. A holy "will you just shut up and listen to Me for a second?" Because you know how far down in the hole I am. You know I am not handling this at all. You know I am not stepping up.
But.
Just so briefly, I guess I did look up. Heard those strange and not-me-at-all words and I looked up, mostly to see who the hell was talking, because make no mistake, I am very much still very much in that horrid, weak and dark starting place. It sucks, I'm sad and it freaking hurts. No updates in those areas. But I think that God thinks maybe I might not fall so hard or howl so loud (ly) if I look where I'm going.
Can I? doubt it.
Will I? not today.
I do sort of get His point, tho. So we'll see.
And it's true. Proven time and time, boo-boo after boo-boo, howl after howl--they will fall if they don't properly assess the situation. If they jump or race or slide, small boys tend to go down hard.
Here's the thing I kinda sorta maybe slightly and completely against my will considered yesterday, tho, that has to do with that: Mommies are just the same. If we don't look, if we don't go the necessary route in the necessary fashion at the necessary speed, if we try to get around/go under/race past something, we, too will go down hard and howl.
Now, I did not get this flair for the obvious from my own vast wisdom, believe me. My dad (who, may I just say, is a whole 'nother book of tales and one that fits right on the family shelf, IF you get my meaning...) is trying very hard to fathom this autism thing--to carry it right along with my mother's illness and figure out why the hell they just don't make brains like they used to. And it's not his thing. Really not. From a very early age, we kids got that this man neither understood, nor enjoyed our presence, but what can you do? My point being that he's never been built for this sort of thing and now he's seventy and he's trying. I'm not saying we all didn't and don't pay for what he couldn't do, but same as before, what can you do? (where was I going with this? Oh...) So he calls and he's trying to be gentle (really really can count these times on one hand, but who's counting?) and he's trying to tell me how the situation could be worse. And while every atom and every particle and every fiber in my heart is howling at him because how the fxck could he even begin to...well, we needn't go there, but while there's all this drama in my silly self, something came out of my mouth clearly without the knowledge or consent of my brain. I swear, I did not have it in me until it came out my mouth. I swear. I said to him, "Dad, LRHF is fine. He's great. He's beautiful and happy. I am struggling. I am tired and angry. I am sad. He ( e.g., LRHF) could not be better. "
I know. Totally not me-ish. Please do sit down.
So I'm rolling this around now. I think that sometimes when God speaks to us and we just keep throwing our tantrums, He must get so bloody pissed that He just sort of slaps us. Shuts us up for a darn second so He can think a minute and so He doesn't have to watch us hyperventilate. I think, I hope that those words He so briefly put in my mouth were a slap like that. A holy "will you just shut up and listen to Me for a second?" Because you know how far down in the hole I am. You know I am not handling this at all. You know I am not stepping up.
But.
Just so briefly, I guess I did look up. Heard those strange and not-me-at-all words and I looked up, mostly to see who the hell was talking, because make no mistake, I am very much still very much in that horrid, weak and dark starting place. It sucks, I'm sad and it freaking hurts. No updates in those areas. But I think that God thinks maybe I might not fall so hard or howl so loud (ly) if I look where I'm going.
Can I? doubt it.
Will I? not today.
I do sort of get His point, tho. So we'll see.
Monday, January 19, 2009
How Long?
How long am I supposed to grieve this autism beast? What is the maximum allowable time in which to cry and kick and yell? When does it soften at the edges and become workable, liveable, prayable? Where is the day when my heart will not break fresh more than one or two times over this?
I want so badly to function. To get on with making it better, helping him adapt, seeing the half-fullness of all this. I know that this grief is selfish and not the least bit helpful to anyone. I know. But damn, I look and look and it is all I have in me right now. I see baby pictures and it hurts. Is that where it happened? Was that when I could have done, should have seen, something? You know, his brother, his twin, almost died at ten days. He caught pneumonia and was taken by ambulance to the NICU. Did I catch it? No. My sister did. Nice job, Mommy. Now, mind you, what the docs originally thought was mottled skin was actually his port wine marks, but still, he was sick, really sick, and I didn't grasp it. Also, mind you, he caught the crap from my sister's kid, but still. So I worried about him, That Little Fuzzy Headed Fellow. I used to rock him and worry that there was some horrid future fallout from all that because I had a bad feeling down deep in my mommy gut. Turns out that the bad feeling was just directed at the wrong crib, the wrong little fellow. Damn.
And yes, I talk to people. Probably talk to them until they wish I was the one who doesn't yet have spontaneous language. And these people use phrases like "fortunate to have a mom like you" and "good parent" and "not your fault" and so forth, and it means nothing to me. Every day, fresh as bread from the oven, I grieve.
My flaw, I know. I have to step up, I know. But Lord be gentle, I can't even look up.
How Long?
I want so badly to function. To get on with making it better, helping him adapt, seeing the half-fullness of all this. I know that this grief is selfish and not the least bit helpful to anyone. I know. But damn, I look and look and it is all I have in me right now. I see baby pictures and it hurts. Is that where it happened? Was that when I could have done, should have seen, something? You know, his brother, his twin, almost died at ten days. He caught pneumonia and was taken by ambulance to the NICU. Did I catch it? No. My sister did. Nice job, Mommy. Now, mind you, what the docs originally thought was mottled skin was actually his port wine marks, but still, he was sick, really sick, and I didn't grasp it. Also, mind you, he caught the crap from my sister's kid, but still. So I worried about him, That Little Fuzzy Headed Fellow. I used to rock him and worry that there was some horrid future fallout from all that because I had a bad feeling down deep in my mommy gut. Turns out that the bad feeling was just directed at the wrong crib, the wrong little fellow. Damn.
And yes, I talk to people. Probably talk to them until they wish I was the one who doesn't yet have spontaneous language. And these people use phrases like "fortunate to have a mom like you" and "good parent" and "not your fault" and so forth, and it means nothing to me. Every day, fresh as bread from the oven, I grieve.
My flaw, I know. I have to step up, I know. But Lord be gentle, I can't even look up.
How Long?
Wednesday, January 7, 2009
"Can Your Boy Dress Himself?"
That's a reference from the King of the Hill where Bobby takes ADHD meds. Because I have to say that most of my boys can dress themselves. Really. Mostly.
Okay, sometimes.
Anyway, Oldest Redheaded Boy started taking ADD meds yesterday. And aw hell, I hate that he does. I'm sad that he does. And daggit, I know better. Back in the day, I worked with ADD/ADHD kids. Truly, I have walked with the medded and the un-medded and the should-be-medded and the forgot-their-medded and the always exciting it's-my-rx-but-my-parents-are-now-medded and I know how it works and that it works, but now he's the medded. And he's mine. So you see how it is.
Yesterday we noted the therapeutic benefit during homework time. Later that evening, he prepared and delivered a lengthy presentation on the sinking of the Andrea Doria to his 4 year old brothers. He closed the presentation with a field trip to the bathroom for a tub-based demonstration of the tragedy. (did I mention that he's a very intense, if unfocused fellow?) He did not spend the evening working on his train/plane/boat/car crash noises. He did not do much in the way of twirling (I don't even want to get into that, but please understand that it was nice not to have it for a change) As a result, I did not spend my evening screaming myself silly, knowing full well that I cannot be heard over the medley of train/plane/boat/car crash noises. So I have to ask: who benefits? Who needs him to be medded? (whispering) Is it me? Is it my problem (read: fault)? Shoddy, shoddy parenting. (normal writing voice) Yes, I know the grown-up answer--we were referred to special people who use special tests and stuff to figure out those answers, and any other kid, any other kid and I would be all about this stuff, but like I said, he's mine. He's a crazy, maddening, obsessive, quirky, bossy, loud, spazzy kid, and I hate how this it's-been-a-long-day-for-the-last year-or-so situation wears on me, but I have to tell you that I still feel really crappy about dosing the kid up on schedule IIs like this. And having to fight with the insurance company about it. That is totally bonus. Oh Please let me give my eight-year-old kid the addictive psycho-stimulants? Oh Please? I know you nixed all that speech therapy and other stuff we asked for when he was younger, and I also know you're completely screwing us on That Little Redheaded Fellow as well, but pretty please?
*sigh*
I know. This is not as huge as I'm feeling right now. Maybe not. And yes, I do have professionals with whom I share all this obsessive mommy guilt. I know.
And you know what else? Right this very freaking minute he is in the living room twirling around and working those awful (if impressively realistic) crash noises that make me want to rip my ears off. So I don't know. I just don't know.
Okay, sometimes.
Anyway, Oldest Redheaded Boy started taking ADD meds yesterday. And aw hell, I hate that he does. I'm sad that he does. And daggit, I know better. Back in the day, I worked with ADD/ADHD kids. Truly, I have walked with the medded and the un-medded and the should-be-medded and the forgot-their-medded and the always exciting it's-my-rx-but-my-parents-are-now-medded and I know how it works and that it works, but now he's the medded. And he's mine. So you see how it is.
Yesterday we noted the therapeutic benefit during homework time. Later that evening, he prepared and delivered a lengthy presentation on the sinking of the Andrea Doria to his 4 year old brothers. He closed the presentation with a field trip to the bathroom for a tub-based demonstration of the tragedy. (did I mention that he's a very intense, if unfocused fellow?) He did not spend the evening working on his train/plane/boat/car crash noises. He did not do much in the way of twirling (I don't even want to get into that, but please understand that it was nice not to have it for a change) As a result, I did not spend my evening screaming myself silly, knowing full well that I cannot be heard over the medley of train/plane/boat/car crash noises. So I have to ask: who benefits? Who needs him to be medded? (whispering) Is it me? Is it my problem (read: fault)? Shoddy, shoddy parenting. (normal writing voice) Yes, I know the grown-up answer--we were referred to special people who use special tests and stuff to figure out those answers, and any other kid, any other kid and I would be all about this stuff, but like I said, he's mine. He's a crazy, maddening, obsessive, quirky, bossy, loud, spazzy kid, and I hate how this it's-been-a-long-day-for-the-last year-or-so situation wears on me, but I have to tell you that I still feel really crappy about dosing the kid up on schedule IIs like this. And having to fight with the insurance company about it. That is totally bonus. Oh Please let me give my eight-year-old kid the addictive psycho-stimulants? Oh Please? I know you nixed all that speech therapy and other stuff we asked for when he was younger, and I also know you're completely screwing us on That Little Redheaded Fellow as well, but pretty please?
*sigh*
I know. This is not as huge as I'm feeling right now. Maybe not. And yes, I do have professionals with whom I share all this obsessive mommy guilt. I know.
And you know what else? Right this very freaking minute he is in the living room twirling around and working those awful (if impressively realistic) crash noises that make me want to rip my ears off. So I don't know. I just don't know.
Friday, January 2, 2009
Boys who Believe
So I'm taking the tree down and I'm always sort of glad to be done with all of it--Mommy can only take so many games of Ornament Hockey and Tinsel Toss, but this year, I feel bad. Sad. Teary-sad. And not even for one of the standard and previously stated reasons. I wonder how much Santa is left for us. How much sweet and open awe will survive another year? And worse, how much did I miss/ignore/bitch about this year because of the generally crappy way things are right now? This all sort of came out of nowhere, really. One minute I'm unhooking fake tree limbs and the next I'm trying to hold back time. My sweet boys. Maddening, quirky, sticky-sweet boys. Boys who drive me to frustration and anger and worry and sometimes despair. Boys who won't/don't/can't fit a mold or even a diagnosis. But they're boys who believe. Really believe. And I know I did not revel in it this year. I did not respect the magic of the children. Everything got in the way and I did not consider how ephemeral that magic is. Oh, I hope my boys hang on for another year. Just one more year. I hope with all that's in my beaten-down self. I promise I will be good and I will be patient and I will ponder it all in my heart. I won't let it be crappy day to crappy day existence. I won't. I will look for the light and the joy. I will be grateful for what my boys can do and not despair over what they might not. I really will try.
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