Is it possible that this remarkable, magical, spectacular love that I have for my husband will not withstand the equally spectacular stress of this life we've created together? Could such magic be so cheaply made?
I don't know.
And I don't know anymore if the spectrum streak that runs through my husband is what will make it just too damned much to bear. I already have one man in my house who refuses to look me in the eye and answer. I don't need another. And is this hardwired? I always figured that through the course of our marriage, the rough spots would soften and we would grow together, change together, learn together. Isn't that how it works? I thought so, too.
Not so much here. He tells me I've changed since we got married twelve freaking years, three kids, two states, one pervasive neurological disorder, and one brain-fried mother ago. Oh really, Honey? Gosh, I'm sorry I let that stuff get to me. My bad. He says we're not supposed to change. (WTF?????) I know, right? But that's what he told me today and I cannot make sense of it and I am beginning to think that he will never, ever hear what I say, never understand my perspective, and never trust my judgement. And the worst is that he will never, EVER talk about it.
Me? I'm all about no secrets. Ever since we had the big secret about how my grandfather drove to the end of the block and put a bullet through his head right before my mother's school bus went by, and nobody told my brother about it, so when he was sick and grabbed his gun in similar fashion, neither he nor his wife knew how this was built into him. (Because it was a secret...shhhh...)
Anyway, ever since then, I'm not much for not talking, for pretending it's sunny outside when the roof is leaking. I don't have the stomach for it. My husband comes from the kind of family that spoke of nothing. Ever. Thus, I am confrontational and difficult and obsessed. No, I'm not. I'm scared and mad and I need to talk about it. Tomato, Tomahto.
I'm horrible. I know. I can't let up. I've changed since we married. I know things now that weigh on me like wet sand. Am I supposed to pretend? I cannot. And I cannot keep asking the same questions and getting no answers. And getting no explanation for the no answers. Not big questions. Regular questions. It's very strange. And one minute he wants a documented list of these "offenses" and the next he thinks I should forget about them. I...I'm damned if I do and damned if I don't. He hears things I do not say. His perspective has changed me, yes. Made me completely gun shy, if you'll pardon the pun. I am wary of talking,it comes at great cost to me, so when I do, it is because I must. Do you see? I must speak and be heard, and I must have him answer when I speak. For good, or for bad, just an answer, please. This is communicating, no? And yet, here we are.
Oh, how I love this man. I do, a million times over and over, I do. But is it enough?
I don't know.
Friday, October 29, 2010
Friday, October 1, 2010
I Know This Much is True
Until LRHF has the therapy he needs, he deserves, and he wants, I'm useless. A concise daily spiral of desperation and anxiety, a nightly recount of maternal failures and fears. In between these two things, I might make pizza.
This is what I am.
All I am. No, really. All I am.
He doesn't want me to play with him, engage him, even in those moments when I hike up the big girl panties and try. He knows I'm not that stuff. He knows how much it hurts when he turns away. How can I blame him? He hates when I pretend to be therapeutic.
Is it so bad that I'm not that stuff? I don't know. Probably. I am so woven to him, so bound to, and blessed by him in his different ways, his secret sweetness, his six year old hurt, and still, I am useless to him. My beautiful boy. So close, it's like he's just in the next room. I can see him, I can, but it isn't my voice that will bring him out. It just doesn't work like that for us. I don't know why. I miss him so damned much. He comes for kisses and for hugs, and that's good, but then he's gone again, back into his world of breezes, and leaves falling, and toy trains, and computers. I need a crowbar to break into that little world now. And I hide, a little. Okay, a lot. Like chickenshit hiding.
Every day without a progress report is a day without progress for me. I am a Noted Progress addict. Because he's not regressing, not unless he knows it'll piss me off, but I apparently can't see progress unless someone else does. Nice. A born mother, that's me.
And there's nothing in sight. Just endless afternoons, watching him soundlessly through the kitchen window. Wondering what he's thinking, what he wants, what he's holding back. Wondering why I've been given this child, this gift, and not the gift of knowing what to do for him. And then turning away from that window and feeling my soul curl up on itself and chew on its tenderest parts. All this, and two other boys who only know I'm tired, I'm "not myself," I'm sad. All this and my marriage, stretched so thin, seams wearing weak, worn spots becoming holes. Oh, how I love that man! How truly he is that one treasure I did choose, and yet he is the one I never see, never nurture, never can. No respite. No dates. No spur-of-the-moment romance. All of every rare moment together is at a great cost, greater stress. Someone has to watch the kids. There are only two people in our Someone Department and we're heading toward ten years of company service. We're it, and it's wearing us bare and abrasive. Defensive. Hurt. Or worse, numb.
I look at the early days, baby days, when all we needed was more sleep. Silly, how hard it seemed back then, before delays and doctors and diagnosis and therapies and applications and modifications and the way it is now. Today I stood in line behind two mothers of infants talking about teething and rolling over and sleeping through the night, and it was all so hard on them...Oh, silly mommies of babies who will most likely not be one of the 1 in 92 on the autism spectrum. Such silly worries seem so very big when they stand alone, I know. I get that. I'm certainly not better for having bigger worries, but I can testify that there are bigger worries. That those mommies were splashing around in the kiddie pool of worries while I'm pulled out to sea by the riptide of autism. Under and under and under.
I don't know what to do here. Where to go. Who to call. Thought about being all Buddha and facing it head on and alone, accepting it, letting it pass through me, and then letting it go. I can't make it work, tho. Autism doesn't work like that, I don't think. But then, I don't think I know much about how Autism works at all.
All I know, all I can be absolutely sure of, is that I am insufficient, not only in my own abilities, but also in finding those things which will be help my son. My beautiful, blessed, and deserving son.
This is what I am.
All I am. No, really. All I am.
He doesn't want me to play with him, engage him, even in those moments when I hike up the big girl panties and try. He knows I'm not that stuff. He knows how much it hurts when he turns away. How can I blame him? He hates when I pretend to be therapeutic.
Is it so bad that I'm not that stuff? I don't know. Probably. I am so woven to him, so bound to, and blessed by him in his different ways, his secret sweetness, his six year old hurt, and still, I am useless to him. My beautiful boy. So close, it's like he's just in the next room. I can see him, I can, but it isn't my voice that will bring him out. It just doesn't work like that for us. I don't know why. I miss him so damned much. He comes for kisses and for hugs, and that's good, but then he's gone again, back into his world of breezes, and leaves falling, and toy trains, and computers. I need a crowbar to break into that little world now. And I hide, a little. Okay, a lot. Like chickenshit hiding.
Every day without a progress report is a day without progress for me. I am a Noted Progress addict. Because he's not regressing, not unless he knows it'll piss me off, but I apparently can't see progress unless someone else does. Nice. A born mother, that's me.
And there's nothing in sight. Just endless afternoons, watching him soundlessly through the kitchen window. Wondering what he's thinking, what he wants, what he's holding back. Wondering why I've been given this child, this gift, and not the gift of knowing what to do for him. And then turning away from that window and feeling my soul curl up on itself and chew on its tenderest parts. All this, and two other boys who only know I'm tired, I'm "not myself," I'm sad. All this and my marriage, stretched so thin, seams wearing weak, worn spots becoming holes. Oh, how I love that man! How truly he is that one treasure I did choose, and yet he is the one I never see, never nurture, never can. No respite. No dates. No spur-of-the-moment romance. All of every rare moment together is at a great cost, greater stress. Someone has to watch the kids. There are only two people in our Someone Department and we're heading toward ten years of company service. We're it, and it's wearing us bare and abrasive. Defensive. Hurt. Or worse, numb.
I look at the early days, baby days, when all we needed was more sleep. Silly, how hard it seemed back then, before delays and doctors and diagnosis and therapies and applications and modifications and the way it is now. Today I stood in line behind two mothers of infants talking about teething and rolling over and sleeping through the night, and it was all so hard on them...Oh, silly mommies of babies who will most likely not be one of the 1 in 92 on the autism spectrum. Such silly worries seem so very big when they stand alone, I know. I get that. I'm certainly not better for having bigger worries, but I can testify that there are bigger worries. That those mommies were splashing around in the kiddie pool of worries while I'm pulled out to sea by the riptide of autism. Under and under and under.
I don't know what to do here. Where to go. Who to call. Thought about being all Buddha and facing it head on and alone, accepting it, letting it pass through me, and then letting it go. I can't make it work, tho. Autism doesn't work like that, I don't think. But then, I don't think I know much about how Autism works at all.
All I know, all I can be absolutely sure of, is that I am insufficient, not only in my own abilities, but also in finding those things which will be help my son. My beautiful, blessed, and deserving son.
Wednesday, September 29, 2010
Three Ring Circus
Ironically enough, I don't believe I've ever used that term to describe my house, my boys, my world. Probably take more than three rings, don't you think?
Am desperate. Grasping at all sorts of odd "huh, I never thought about that" ways to have at the very least, another pair of eyes connected to a brain that has a mouth from which to yell "No, no, NOOOO, LRHF!" (that seems to be my forte in this parenting game. Not trying to impress anyone, I'm just saying.)
So a neighbor knows some people who work with some people who might know some people who might be able to help us keep it together, at least for now. So I make some calls. And one of these people, she calls me back. From Circus Camp in Vermont.
Circus Camp.
Right. I know.
But certain times call for certain measures. So we meet up, all of us. And we're trying to figure out if this is something that might be do-able, even just a teensy bit. And she notes LRHF's red hair and offers to trade her redhead for my redhead. (which btw, is probably legal in our great state and then I could stop listing Fuzzy on Ebay) So I say, "how old is your redhead?" and she says, "he's seventeen," and I say, "I love teen-age boys!" (Note to self: stop saying this to people, for heavens' sake, and find a new way to explain that you particularly enjoy working with adolescents, because this way is really, really creepy, even after you clarify)
Long story short, we no longer have trained therapists. We have another redhead. Granted, a more-likely-to-be smart and responsible one, but I just sort of think it's funny. Maybe not ha-ha funny, now that I really think about it, but another potty-trained person is another potty trained person, you know? That's pretty much the bar these days. And his mom will work w/LRHF on motor stuff, too. She's good, just busy. And she brings all this circus stuff when she comes.
Oh, and also, as one might expect in Our Family of Strange and Useless Superpowers, we've discovered that Big Boy is really quite a natural at walking on stilts.
That'll come in handy someday, right?
Am desperate. Grasping at all sorts of odd "huh, I never thought about that" ways to have at the very least, another pair of eyes connected to a brain that has a mouth from which to yell "No, no, NOOOO, LRHF!" (that seems to be my forte in this parenting game. Not trying to impress anyone, I'm just saying.)
So a neighbor knows some people who work with some people who might know some people who might be able to help us keep it together, at least for now. So I make some calls. And one of these people, she calls me back. From Circus Camp in Vermont.
Circus Camp.
Right. I know.
But certain times call for certain measures. So we meet up, all of us. And we're trying to figure out if this is something that might be do-able, even just a teensy bit. And she notes LRHF's red hair and offers to trade her redhead for my redhead. (which btw, is probably legal in our great state and then I could stop listing Fuzzy on Ebay) So I say, "how old is your redhead?" and she says, "he's seventeen," and I say, "I love teen-age boys!" (Note to self: stop saying this to people, for heavens' sake, and find a new way to explain that you particularly enjoy working with adolescents, because this way is really, really creepy, even after you clarify)
Long story short, we no longer have trained therapists. We have another redhead. Granted, a more-likely-to-be smart and responsible one, but I just sort of think it's funny. Maybe not ha-ha funny, now that I really think about it, but another potty-trained person is another potty trained person, you know? That's pretty much the bar these days. And his mom will work w/LRHF on motor stuff, too. She's good, just busy. And she brings all this circus stuff when she comes.
Oh, and also, as one might expect in Our Family of Strange and Useless Superpowers, we've discovered that Big Boy is really quite a natural at walking on stilts.
That'll come in handy someday, right?
Wednesday, September 22, 2010
Didn't We Almost Have it All?
LRHF’s therapy program ended. Just. Ended. It took surprisingly little to end the program around which we scheduled 4 hours a day, 6 days a week for the past year or so. Just a meeting and a job loss cost us that program that was created for my son, ( Remember it now? All those posts about “hope” and selling my soul. Whatever.) Yeah, that’s the one.
Gone, Baby, Gone.
Gone with the Wind.
Gone, Gone, Gone.
So what does this mean for us who make Havoc and Shine? Hmmm...I'll try to explain how it changed every one of us, how it showed us just the tip of LRHF’s potential, and how whetted his little six-year-old appetite for more, more, more. And now, how big a rip, a gash, a gore it left in it's wake, in our hopes. How pointless it all seems now.
Oh, but how rude of me!
I should bring you up to speed. Won’t take long.
Friday: all okay. Program all systems go. Business as usual. Same old, Same old.
Monday: scheduled meeting. Program’s over. Oh. I'm sorry, what? (and WTF?!)
BUT the good news is that we have a referral. Really great too, because it's the only other show in town. So I called the referral (caught her on the way to her Lake House don't you know), she made it palpably clear in her tone that she wasn’t interested in helping my kid by virtue of our zipcode She was suddenly very short-staffed. Stretched sooo thin. Too far for her staff to come. (Umm...no, no it really isn't)
We live in a lovely ‘hood. It is a mixed ‘hood. It is the Deep South. ‘Nuff said? Exactly.
And now you are up to speed.
So here we are. What a steaming freaking mess. *I* have learned nothing about doing this mom-to-autie gig better. Fuzzy and Bigboy don’t know what to do with their quirky damn selves except push each other’s buttons. Dh is at work for all of this, so he’s all like, “what’s the big deal?” You want to know to whom it is a big deal, a big damned motherfreaker of a deal? It’s a big deal to LRHF. Yeah. He’s sad. He’s mad. He’s stimmy. He’s biting kids at school. He’s really not happy at all that he no longer has a staff. What’s more, he’s really quite sure that it’s Mommy’s fault. Yup. And he fully intends that Mommy will know it is her fault via an impressive variety of non-verbal actions. Some are potentially amusing, it's true, because they are so very, very clearly directed at me. Not funny for the target. He stops the washer and dryer mid-cycle. Not good in Deep Southern Heat. He hides my tools, or worse, uses them. He covers my plants with sand. Found some of my half-done (and quite frankly half-assed) arty project thingies in the trash. He got out all my spice extracts, lined them up beside the sink, waited for my full attention, and then systematically dumped them down the drain
(It was at this point that Fuzzy walked by and said, “Mmm…I smell muffins!” *sigh*).
Then there are the not-so-amusing-and-potentially-dangerous ways he shares his feelings. Like running downhill toward the road. Like attempting to do his own cooking. With the oven. On Broil. Like busting the lock on Mommy and Daddy’s bedroom door because he knows, you see, he knows that sex is all Mommy and Daddy got left.
Oh, Sweet Boy, I am sorry, so very sorry for so many reasons, but I did not do this thing. When you finally rest your crying and over-stimulated self in my lap and tell me, “lonely” you must surely know I did not do this.
Please know this.
I couldn’t do this thing. Really. But it is done and me? I’m a sham. Oh, all Autism-is-not-the-End and whatever. Full of shit, that’s what I am. Still weak, still crying, still frozen. So I guess some things don’t change. Except that LRHF has changed. He's is no longer the less-independent, less able, younger Face-of-God baby he was when the whole dog and pony show started. He's in on the secret--he's smart, smart, smart. He’s pulling out all the stops--remembering the old ones, adding in new twists, and let me remind you that I am SO much older than I was back then. Older than I was yesterday. Slower. Left with only paper-thin patience, all the time, every time. Lots of yelling. Giving up or giving in. Mighty fine parenting. And I hate all of it, because I do know better, but I also know when I’m beaten. You know, there's "getting through" something and "being through" with something. I think I had the two confused or something. Or I never knew the difference.
Doesn’t matter, really.
And now there is no one to tell. No one has ideas, and no one has time and no one knows how truly useless I am when left to my own mothering devices. But my favorite, my personal favorite--that which stuns me every goddamned time and when will I ever learn, is that no one stays. They just...drive away.
Our beautiful and beloved Walter-Cat died so suddenly and without warning that I screamed when the vet called. Pillar of Strength, that’s me. Worse, tho, I can’t help but think if I’d paid better attention to him instead being on constant and necessary angry autie watch (it might involve broiling, remember), maybe that not-very-old-and-in-pretty-good-shape Brother Cat would be at the foot of the bed even as I write.
These ripples just keep on coming, never calming, even a little bit--that kid just has such a
great memory, everyone said that, you know. And now he’ll never forget when all the people came to play with him and teach him, and encourage him.
But the worst of the worst?
I wonder if he thinks I’ve given up on him. Really, I do. You know how I am. There’s hurt in his face when he looks at me now, and in that peaceless part of my mommy-heart, I wonder this horrible and untrue thing. I suppose I have given up on me, now that I think about it.
And it stops me cold. I’m…I can’t.
Now to be fair, you know our circumstances are a bit harder than most, and you know that I'm a bit less capable than most, and that our family dynamic is a bit more um...complicated than most, so truth be told, it’s probably just me being, well, me.
(Right? It’s not that big a deal, right? I’m making way too much of it, right?)
But what if it is too much? What if my 18th trip back to square one is the one that leaves me stuck? What can I give my beautiful son from there? What if I’ve given up? It does happen , you know. It happens to people who can only pretend to be strong and brave and capable. It happens when they can’t pretend anymore.
It happens when it ends.
Gone, Baby, Gone.
Gone with the Wind.
Gone, Gone, Gone.
So what does this mean for us who make Havoc and Shine? Hmmm...I'll try to explain how it changed every one of us, how it showed us just the tip of LRHF’s potential, and how whetted his little six-year-old appetite for more, more, more. And now, how big a rip, a gash, a gore it left in it's wake, in our hopes. How pointless it all seems now.
Oh, but how rude of me!
I should bring you up to speed. Won’t take long.
Friday: all okay. Program all systems go. Business as usual. Same old, Same old.
Monday: scheduled meeting. Program’s over. Oh. I'm sorry, what? (and WTF?!)
BUT the good news is that we have a referral. Really great too, because it's the only other show in town. So I called the referral (caught her on the way to her Lake House don't you know), she made it palpably clear in her tone that she wasn’t interested in helping my kid by virtue of our zipcode She was suddenly very short-staffed. Stretched sooo thin. Too far for her staff to come. (Umm...no, no it really isn't)
We live in a lovely ‘hood. It is a mixed ‘hood. It is the Deep South. ‘Nuff said? Exactly.
And now you are up to speed.
So here we are. What a steaming freaking mess. *I* have learned nothing about doing this mom-to-autie gig better. Fuzzy and Bigboy don’t know what to do with their quirky damn selves except push each other’s buttons. Dh is at work for all of this, so he’s all like, “what’s the big deal?” You want to know to whom it is a big deal, a big damned motherfreaker of a deal? It’s a big deal to LRHF. Yeah. He’s sad. He’s mad. He’s stimmy. He’s biting kids at school. He’s really not happy at all that he no longer has a staff. What’s more, he’s really quite sure that it’s Mommy’s fault. Yup. And he fully intends that Mommy will know it is her fault via an impressive variety of non-verbal actions. Some are potentially amusing, it's true, because they are so very, very clearly directed at me. Not funny for the target. He stops the washer and dryer mid-cycle. Not good in Deep Southern Heat. He hides my tools, or worse, uses them. He covers my plants with sand. Found some of my half-done (and quite frankly half-assed) arty project thingies in the trash. He got out all my spice extracts, lined them up beside the sink, waited for my full attention, and then systematically dumped them down the drain
(It was at this point that Fuzzy walked by and said, “Mmm…I smell muffins!” *sigh*).
Then there are the not-so-amusing-and-potentially-dangerous ways he shares his feelings. Like running downhill toward the road. Like attempting to do his own cooking. With the oven. On Broil. Like busting the lock on Mommy and Daddy’s bedroom door because he knows, you see, he knows that sex is all Mommy and Daddy got left.
Oh, Sweet Boy, I am sorry, so very sorry for so many reasons, but I did not do this thing. When you finally rest your crying and over-stimulated self in my lap and tell me, “lonely” you must surely know I did not do this.
Please know this.
I couldn’t do this thing. Really. But it is done and me? I’m a sham. Oh, all Autism-is-not-the-End and whatever. Full of shit, that’s what I am. Still weak, still crying, still frozen. So I guess some things don’t change. Except that LRHF has changed. He's is no longer the less-independent, less able, younger Face-of-God baby he was when the whole dog and pony show started. He's in on the secret--he's smart, smart, smart. He’s pulling out all the stops--remembering the old ones, adding in new twists, and let me remind you that I am SO much older than I was back then. Older than I was yesterday. Slower. Left with only paper-thin patience, all the time, every time. Lots of yelling. Giving up or giving in. Mighty fine parenting. And I hate all of it, because I do know better, but I also know when I’m beaten. You know, there's "getting through" something and "being through" with something. I think I had the two confused or something. Or I never knew the difference.
Doesn’t matter, really.
And now there is no one to tell. No one has ideas, and no one has time and no one knows how truly useless I am when left to my own mothering devices. But my favorite, my personal favorite--that which stuns me every goddamned time and when will I ever learn, is that no one stays. They just...drive away.
Our beautiful and beloved Walter-Cat died so suddenly and without warning that I screamed when the vet called. Pillar of Strength, that’s me. Worse, tho, I can’t help but think if I’d paid better attention to him instead being on constant and necessary angry autie watch (it might involve broiling, remember), maybe that not-very-old-and-in-pretty-good-shape Brother Cat would be at the foot of the bed even as I write.
These ripples just keep on coming, never calming, even a little bit--that kid just has such a
great memory, everyone said that, you know. And now he’ll never forget when all the people came to play with him and teach him, and encourage him.
But the worst of the worst?
I wonder if he thinks I’ve given up on him. Really, I do. You know how I am. There’s hurt in his face when he looks at me now, and in that peaceless part of my mommy-heart, I wonder this horrible and untrue thing. I suppose I have given up on me, now that I think about it.
And it stops me cold. I’m…I can’t.
Now to be fair, you know our circumstances are a bit harder than most, and you know that I'm a bit less capable than most, and that our family dynamic is a bit more um...complicated than most, so truth be told, it’s probably just me being, well, me.
(Right? It’s not that big a deal, right? I’m making way too much of it, right?)
But what if it is too much? What if my 18th trip back to square one is the one that leaves me stuck? What can I give my beautiful son from there? What if I’ve given up? It does happen , you know. It happens to people who can only pretend to be strong and brave and capable. It happens when they can’t pretend anymore.
It happens when it ends.
Saturday, September 11, 2010
God's Lap Cat Now
Walter Tucker 1999-2010
Feline Ambassador to Dog People the world over.
Tolerant of many boy-based indignities.
Our Best and Beautiful Boycat, loved quite well and lost too soon.
More later.
Very Sad.
Feline Ambassador to Dog People the world over.
Tolerant of many boy-based indignities.
Our Best and Beautiful Boycat, loved quite well and lost too soon.
More later.
Very Sad.
Monday, September 6, 2010
Picnics, Packing, and Pharmacology. And the therapy thing.
Well, we've been invited to a labor day picnic at our brand new community garden today. I'm so excited to see the outside world that it's pathetic. Of course the community garden part is an exciting thought as well.
Guess it's time to start packing. Trains, extra clothes, food, juiceboxes, dvd player/dvds...did I mention that autism makes a three hour picnic the equivelent of a three week trip?
Here's the thing: a year ago, we would have stayed home. Today, I'm packing for a picnic that we fully intend to attend--fully armed (autie-wise) but still.
Tomorrow I will have to call my shit insurance company and raise hell to get Big Boy the totally generic, totally safe, totally necessary meds that shit insurance doesn't want to provide. They'd like to keep him on the stimulants. Niiiiiiice.
And that is the easy part.
Tomorrow I will also have to face the whole no-therapy=impossible autistic kid situation. I have no idea. Not one measly pea-brained idea. And I am sooooo much older than I was two years ago. So much older.
Kumbyah, my Lord. Please Kumbyah.
Guess it's time to start packing. Trains, extra clothes, food, juiceboxes, dvd player/dvds...did I mention that autism makes a three hour picnic the equivelent of a three week trip?
Here's the thing: a year ago, we would have stayed home. Today, I'm packing for a picnic that we fully intend to attend--fully armed (autie-wise) but still.
Tomorrow I will have to call my shit insurance company and raise hell to get Big Boy the totally generic, totally safe, totally necessary meds that shit insurance doesn't want to provide. They'd like to keep him on the stimulants. Niiiiiiice.
And that is the easy part.
Tomorrow I will also have to face the whole no-therapy=impossible autistic kid situation. I have no idea. Not one measly pea-brained idea. And I am sooooo much older than I was two years ago. So much older.
Kumbyah, my Lord. Please Kumbyah.
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