Monday, December 27, 2010

RE: "All Done"

I meant it. I did.

It grieved me and I wept and shook until my eyes ran dry and my bones ached cold.


I had no words. None had worked, none had elightened, none held comfort, and then, none were kind.


I had no words. I always have words. You know that.


Too many words. Words bled out of my mouth in grief and desperation and anger, and for my part, it was not the least bit helpful.

*sigh*


In fact, my words wove themselves into a noose. If I could have shut up for even a minute, if I could have taken even one full breath, if I had not ignored the bits of my heart as they fell away in every room with every fight, then perhaps I would have done the wiser thing, the kinder thing. Because at that time, I was the one who could do the wiser and kinder thing. My husband is, however I might perceive it, in his own place of dark hurt, and so he speaks from this place. Maybe he's never been there before, I'm not sure. But I was so scared...I wasn't cool...I wasn't empathetic...I was just um...wordy.

Stupid wordy.

Couldn't get it right or clear or sensical. Then I couldn't even get it kind.

Long story short: I should have known when to shut up. And I should have remembered a frequent conversation I have with God in which I announce in no uncertain terms that I am "all done." I do believe He glances down at this silly, silly child and in His endless patience, He simply asks, "Well, LAH, tell Me then: What, exactly, have you done?"

Oh. Right.

And please don't misunderstand me, this is not exclusively my fault, and I don't take all the blame for it. We have junk. And in fact, he has more junk than either of us realized. And his junk doesn't go with my junk very well at all. But I hope that LRHF has taught us enough about the jumps and starts and fits of moving forward that we should apply it to our marriage.

Do we need help? Oh, ho, yes. And we'll get it. oh, ho, yes.

I'm re-reading this and thinking that I must be quite sleep deprived to think this piece makes a bit of sense, but I needed to say, wanted you to know, that despite our struggles and hurts and misunderstandings, we are not in the last bit "all done."

Tuesday, December 21, 2010

"All Done"

That's what LRHF would say when he couldn't do something, or something was hurting him, or he didn't see the point of something.



He's picked up a few new ways to make his point since then, but wisely, he keeps that sharp phrase in his back pocket for the really, really big stuff.



So I'm borrowing that no-frills-and-to-the-point sentiment today because I am tired, so tired of my own stupid, pointless rodent-on-a-reelride words. And if you think I'm tired of them, if I think my words are stupid and pointless, then consider that my husband's ears are practically bleeding. Ahhh...He doesn't want to talk anymore and doesn't see the point.

Since that's precisely when LRHF would say it, why not go with what you know?



And this I do know because I saw myself through his eyes last night.



My marriage.



"All Done."

Thursday, December 16, 2010

Soulstice

Yes, I know there's no "u" in Solstice.

And yes, I do know how to edit a misspelling. I meant that u with all my heart. With all my heart because all my soul is darkening and deepening and falling, falling.

And I am afraid.

Tonight I began to light the candles at the ever earlier dusk, lighting each one, asking for mercy and illumination and grace and warmth. (Rush the season much? yes, well, desperate is desperate, thank you)

And this very small, very un-liturgical ritual is made all the more meaningful by LRHF, who is my anti-alcolyte of sorts--he follows me around, waits for me to finish, and then blows out the candles. He had a hood on tonight, but I am 99% sure it was him trailing a few feet behind me with the stealth of Walmart buggy. I don't know if his act extinguishes mine or makes it more meaningful. Isn't that funny? Does God watch this mother/son ritual and shake His Head at it's uselessness? Or does the smoke from the extinguished flame carry my voice just a bit closer to His Ear? I don't know. Maybe both.
It's a pain in the ass, but what can you do? the kid loves birthdays and birthdays have candles and...you get it now, don't you?

And Dammit, it's dark again this year. I carry my sore and tired marriage and my all-gone mother, my far away husband and my beautiful children, all on top of a very broken me, and it is all dark right now. I know that in my soul, I must go through the dark to get to the light. I know that Solstice is about the promise and the hope and the anticipation of light and rebirth and newness and growth. I know all that. If I didn't, why on earth would I go around lighting candles muttering to myself, knowing full well that LRHF was hot on my heels?

But then, there's so much I don't know. What if this is as bright as it gets? What if the days get longer, but not lighter?

I don't believe I've ever been so afraid of the dark.

Friday, October 29, 2010

Taking Two to Tango

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 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.

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?









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.

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.

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.

Saturday, September 4, 2010

I Have Been Outed

Yes, it's true. I am out.

Oddly enough, I don't feel even a teeny bit liberated by the experience. No huge sigh of relief. No new-found empowerment. Strange, huh?

Oh. Wait. Maybe it's not the same thing.

I have been outnumbered, outwitted and definitely out-penised. Maybe there's another kind of out that is more fun. I'll have to ask.

We ran out of therapists last week. Yes. I have been the only adult for fewer than seven days and already I'm bitching about it. Ahh....yeah, you've met my kids, so don't look at me that way.

For the last year and a half, we've had therapists in the LRHF Home Therapy Program, mostly six days a week. We revolved around them because they revolved around LRHF. I kept one bathroom up to OSHA standards (sorta), watched out for untimely cat puke, and kept a lot of doors shut. It was nice.

I miss it.

I miss it for the obvious and scary reasons, of course, that well, he's getting no therapy. That's the big reason. But not trailing too far in second place is that it was really, really really great to be able to go outside and work, or take soup to a neighbor (yes I did really do that, thank you very much) and come back to okay-ness. Nothing broken. Minimal screaming, everyone accounted for, no one eating glue...it was good. Waaaay good. Damn Good.

In fewer than seven days I have found out that I am so freaking out of my league that, I don't know, someone should call somebody or something. LRHF keeps looking for his "staff" and he's mad as hell that they're gone. Mad as hell for LRHF means entire boxes of cheese crackers opened and crushed and spread all over the many rugs in many rooms, dvd players dismantled, freezers left just slightly open, and all other manner of other reindeer games.

Oh God, the juice! The-pouring-red-juice-myself-episodes! Ohhhh noooo....wow, that is some sticky shit, let me tell you what.
What I'm waiting for is the egg thing. That will be the real death knell for me and all my marginal mothering ambition. That's when he finds the 18 pack of eggs that we've hidden in the fridge and just cracks them all. Eighteen eggs. Massacred. Now, it used to be that he left a trail from the fridge to the stove. Probably eight feet of egg goo. Eventually, the number of eggs lost in battle remained unchanged, but the trail got shorter as his aim improved. Still, eighteen eggs, is eighteen eggs. And no cleaning staff is, well, me scraping the congealed crap up as best I can before someone dances in it.

*sigh*

And just to be straight (not that there's anything wrong with that), I'm around. Seriously, where would I go? But he has this drive for independance that I just can't beat. Back when we first started therapy, I'd spend entire days dancing around my kitchen asking him what he wanted...trying to get requests out of him. All different ways. Must have looked like an absolute idiot to him. Nothing. Then, the very second I, oh...went to relieve myself, or break up another fight, or clean up another mess, he was all over getting the stuff himself. Like a superhero, he was. Cheezit Man. (Can you just picture that superhero outfit? Good thing he looks good in that color) I have pre-poured juice all ready for safe and dripless consumption. No good. He wants to pour it himself, and so he will. With varying degrees of success. Now this is part of the package regarding the men here. The world is made up of men in their family and Idiots. You do the math.

I'm scared about finding therapy for him. Really scared. Praying a lot. Really praying. Please don't mistake my priorities here.

But honestly? I'm so...tired. Feel like I've been on guard forever. Don't I get 15 minutes for every 4 hours? I've got stuff to do, stuff that has to be done, like laundry and then stuff I *might* enjoy doing, like working outside. Did you see mani-pedi anywhere in that last sentence? Me neither. And yet. Constant vigilance is not my strongpoint. Much better at vague awareness. Or gut feeling. But this constant chase,(and it is a chase, he's that freaking fast), is killing me. He's totally onto me. I can't win. I am too old and he is too smart.

Please, please, I just want a tiny bit of that old okay-time back...just a second or two. It's been a really long day for the last few years. I'm losing light. That spark that I swear I saw at the end of the tunnel. But no end in sight. No therapists lined up. Just a very smart, ferociously frustrated autie, his drama queen-esque, slightly-ignored-but-no-less-loved brothers, and their very sad, very scared, and very tired mother.

He's winning. I'm yelling. It's not working. It's not working.

I don't like being out, thank you very much. Can I ask for a time-out instead? That sounds so lovely. The little chair in the quiet hall...I'm 43, so one minute per year (ask any child expert) means almost an hour for me.

Wow. I'm in.




Thursday, September 2, 2010

A Belated Thank-You Note to LRHF

How many years can one technically work on potty training? Is there a cut-off? A retirement? a money-back guarantee? S'pose not, because I would have found it by now.

Six years is a long time, even when mommy is really only phoning in her efforts b/c the only thing she hates more than diapers is that very iffy period of infinite accidents that follow potty training.

But LRHF will get it. Oh, yes we can. Just wish the we didn't include me. I'm tired.

So we're working on it. Sort of. More than we used to (we, being me--my husband is very good about this). And this kid knows me. Knows how to push buttons. And I know he knows. And he knows I know he knows. And...oh, never mind.

The other night I casually suggested we visit the potty before bed. Sort of laid back, you know how I roll...just and idea, really...but he toddled off, pulled down the ol' pull up and sat.
No pressure. No expectations. Just chillin' on the potty.

But then, much to our mutual surprise, there was pee pee! There was pee pee going with gravity in the general direction most of us send our pee pee. I got excited. "Hurrah!" I yelled.
"You are so big now!" and all the like.

My LRHF, my beautiful boy, waited for me to regain my composure, then stood up, little pull-up down at his ankles, and he looked at me for a moment. Thinking. Then he said it. Very simply and clearly and emphatically.

He stood in front of that toilet, looked his poor feeble mommy in the eye and he said,

"You're Welcome!"

Thursday, August 5, 2010

Wade-ing In

So this sucky summer. So sucky. So very, very sucky.

And still.

Every day comes, and like it or not, I get out of bed. To mayhem, to bedlam, to Daddy's-been-wrangling-this-crap-for-going-on-three-hours-already, but what's a girl to do?

I wade in.

Reluctantly, sometimes tearfully, often fearfully, but nothing to do but go through. Through this sucky, sucky summer. Patch the pool. Change the diapers. Break up the fights. Lose the keys. Lose the autistic kid (okay, only once, and he was in bed asleep, so there)

And I am not much in the morning. Not much at all. I used to sleep, oh, years ago, but time and worry, dearth of morphine receptors and a Rasputin-esque resistance to sleep aids has stripped me of good sleep. So I am not much in the morning until well into the afternoon.

Very often, there isn't much to see. Much worth looking at, more like it. My boys, all mine, all very me, are Coke, Milk, and Orange Juice. Separately, they are fantastic. Together, rather difficult to swallow. And OH, Autism wears us down every minute of every day. My poor sons, paying individual prices for what autism rains down. My poor marriage, my poor husband, paying in time and touch, nurture and need. My soul, sold, in it's tattered entirety for better or worse, but for a therapy that is working as provided from a brilliant, good, honest person with lots of letters after his name who took another hourly fee cut that I wasn't supposed to know about. Everything is HARDER. Everything is RISKIER. This is mostly, almost exclusively the case.

But.
Everything is not what it seems. (total caveat: sometimes) I've said it before--that which we take for granted in our typical kids, typical lives, those moments, those achievements, those brief lights, they are elevated to Andrew Lloyd Weber-like miracles. Joys. (e.g., "he used an abstract pronoun just now! did you hear it? I heard it! He made a request and used an abstract pronoun and he totally gets the concept!"
And that was just yesterday.

Today, my husband admitted that yes, he'd made the right choice for our marriage, but that the outcome sucked. Seems his mother (and don't get me started) doesn't think there's much to be done for my glorious face-of-God-son, so she's not interested in helping out with the 32k in therapy costs. The less than 8% my husband told her we needed. She "might need a new water heater next year."

Oh.

Like I said, don't get me started. She will have to explain all this to Jesus at some point, and so I must be satisfied with that for now.

So you see, Wade, my friend, my fourth grade friend, I am witness to mostly extremes, I think. My marriage, a great worry for a bit, will be fine, and oh, I am so very grateful for the gift that is my husband and his love, but I am incensed, horrified, pained, grieved, and supremely pissed off that his mother, any mother, any human, could play a part to deny my son's future because the possibility of a faulty water heater next year. I know that she is very broken and that my husband is very lucky to have salvaged himself, and I know that this is not how the story will end for my most red-headed son, so I tell you that these are simply the extremes, the normals that come with those lessons I apparently missed in high school.

And forgiveness? what do I know of that? I know that it comes in many, many forms and that not one of them involve forgetting. Guess I'll have to wait for it, because I am so not feeling it now, but I know that this thing we call forgiveness, our way, not God's, is for our benefit. I will be better for having learned to do it. When I learn and choose to do it. I'll choose. Makes me feel superior.

Autism? I hate it. Hate it. But it has made me stronger. Tougher, even. Essex Girls not tough enough, eh? Try Essex Girls who have sweet redheaded boys who have autism. Tough Bitches, we are. But true to what is necessary and what is sweet and what is bullshit.
And we don't mix them up. Ever.

Wading in, whining always, wanting out, all just a part of Havoc and Shine.

Thank you for every time you listen.
xhxhL

Monday, August 2, 2010

Such a Sucky Summer!

Wow.
Seriously, Wow.

Thank God we start school obscenely early in the Deep South or I'm not sure how many boys would be left to register...Bad, bad, bad Mommy.

Well, tired and worried and stressed Mommy. Mommy who is terrified that Daddy has made choices that will change our marriage in the not-good-beginning-of-the-end- ways. More on that later, but suffice it to say that it involves His Mother and how much she prefers her cats to her grandsons. Especially the grandsons with pervasive developmental disorders and windows of opportunity that will not be indefinitely open. Am so angry, so hurt, so unable to wrap my head around it, that it terrifies me. In that dark place where nothing makes sense. We've been there before, remember? Yeah, that's the place. My new address.

When I can, When I can make enough sense of it to explain it, or at least convey it, I will will share with the class. This is not then.

Ahhh...I'm tired. It's late. I don't have anything witty or brilliant ot say. I'm just...
just scared.

Wednesday, June 9, 2010

Somebody Blinked

You know the pictures--grown-ups posed, children stilled, cameras click...

"Cheeeeeeeeeese!"
Hurray! That Haley's Comet Family Moment When Everyone Shines exists for all time and for all to see. Facebook it. Email it. Make prints for the Christmas card. This is concrete proof that you-and possibly,(but not likely, let's not kid ourselves) your siblings are just really quite fine.

Oh, but Hell--look again, a little closer. Maybe it's someone on the end. Maybe someone in the back. But Somebody blinked!

Ruins the whole shot. And, of course, there's no second chance because those people, in that moment, will never shine quite like that again. Parents will age. Marriages will falter. Children will sulk. Schedules will conflict. Grudges will sprout.

Sheesh. Family, right?
But maybe next year we could all... right?

See, I was part of a picture like that when we were on vacation this summer. So cool. All of us. My husband's extended family. People I haven't seen since, geez, our wedding, maybe. We had a vacation cookout and we told funny stories, and the kids were lunatics and then we took this picture by the pool. Everyone looks happily wind-tousled and sunburnt, the kids made goofy faces and I knelt behind Fuzzy (how else to keep him still?) and smiled, and waited for the six timers on the six cameras to go off.


But it was in that new and happy moment that I realized that my family would never have such a thing. We missed out big. There will never be that picture.

Somebody Blinked.

My family, my parents, my brother and sister and their spouses, the cousins, my kids, extra friend-along kids--I know now that I won't ever smile and wait for that flash. Not because I don't show up on film (although that's always my first excuse when I see a camera), but because, in an instant, in the blink of an eye, we lost our chance.
That smiling wind-tousled-by-the-pool moment passed by my family, as casually as salty breezes do, drifting past us to some other family, by some other pool,on some other vacation. And probably this family, this other vacation family, didn't have to research the number of doors, the depth of the pool, and where the fence ended for their autistic kid. And this other family probably didn't have to worry about Grandma stealing candy from Harris Teeter, or grabbing food off the grandkids' plates during dinner. This family, this let's-set-aside-our-differences-for-the-week-and-relax family, I'll bet they took lots of pictures.
I know I would. But then,that's because I know what we've lost in the last few years.
How it has changed us, hardened us, made us look away.
My dad tells me that mom is losing language entirely now. Agnosia. Part of the Pick's Disease Package. My mother, once so very quick-witted and gracious, is fading with the tangled fury of a late-summer rip-tide. There are no lifeguards and swimming parallel won't help at all, this I know.

My sister is silent in a different way. Her blind fury at me (and for what? how many goddamn times can I ask? you know I've asked at least that many times and then some) has silenced her and thus, she cannot, will not explain.
Gone.
And my brother, the only one who can and/or will make words into sense, had some thing, some infection, and almost died in the ICU not too long ago. . I didn't know. And I almost lost him. That suddenly. In the blink of an eye.


But there was this one time, tho, we planned to rent a beach house together, all of us.
A lifetime ago. Big Boy was not yet big at all. Fuzzy and LRHF were strictly conceptual in nature. My mother had only just begun to be a tiny bit lost, and my siblings seemed well and happy and tolerant, if nothing else.
But really? not so much. Because, you see, it was at that time that my brother, my gentle, true, bear of a big brother, broke a bit, took his loaded gun and prepared to end his life. Now,he did not. He managed to make the right phone call and get the right care. But it sure did put an end to the vacation plans. And it was the first sign, I think, that we would never, ever be that vacation family with the pool picture. The rest came so steadily, gradually, stealthfully. We learned our family secrets and learned that knowing them was almost, but not quite, as bad as hiding them. We became wary and careful with each other. Finally, we simply stopped. Stopped family-ing. No kidding.

So simple. One good picture, right?

What could go wrong? So quickly, so precisely, so mercilessly?
I surely didn't see what was coming.

I must have blinked.








Monday, June 7, 2010

500 Miles...Lord, I'm 500 Miles Away from Home

That's strictly an estimate regarding mileage and (handily enough) one of my favorite songs.

Vacation. Of sorts. 13 hour drive to unknown place with lots of glass doors, sand, and notoriously rip-current-y ocean, several days of arguing (I mean discussing) with spouse who should monitor LRHF (did I mention the private pool? and hot tub? and lampshades with glass beads on them?) and then the 13 hour drive back home to...the week-old catbox.

(Jealous yet?)

And no, of course, we could never afford this luxury. We're staying with family, very gracious family (which means not from my side), and we're all learning Very Important Lessons about vacationing with a special needs child. Am sure family is perplexed--am sure they assumed we, parents of special needs child, knew what we were doing, had taken some class in this, but this is our first vacation since before we had Big Boy, so we're um...no help at all regarding the special needs thing. No idea. Nada. Nothing. Yeah, he might make a break for it. Yeah, he could take out all 8 flat screen tvs...

(oooh, you might want to hide that. And that. Oh, and that.Just to be on the safe side, you understand...)

Then again, he might not do any of that stuff. LRHF could be totally cool. He's mercurial like that. Autism is mercurial like that. And of course, mercurial is not conducive to relaxation or fostering happy family memories.

So here we are.

Our very, very first family vacation. Maiden voyage of sorts. You know me, I never go. I stay behind to refinish floors and paint rooms and watch entire box sets of Dr. Who. And yet, here I am on vacation. With us. Part of us.

Scared of us.

And yet there is this one image that brings me and keeps me here in this fancy-ass glass-doored unknown. At some point on this day, my LRHF will see the ocean. And he will see the sand. And he will see where the two meet. And I do think, I really believe that this will be so very glorious to him that he will birdie dance himself into levitation.

So, as with so much, I am weak and scared of what I do not know. But, equally with so much, my son, my LRHF will be better than me. He will be unbridled glee and unabated wonder.

(of course, then we'll have to chase him and possibly call in professionals to lasso him right and proper, but then again, maybe not. We just don't know.)

Saturday, May 22, 2010

Who Doesn't Love to Read Eulogies, Right?

Well, I write them. And then I deliver them. And yes, I, too, wonder what this says about me, but it seems to fit pretty well into the general package, so it's no big deal. They die, I write. Sometimes there's drinking in between those two things, but that's pretty much the protocol. My friend John refers to this peculiarity as "limited speaking tours."


Anyway, I don't think I ever really told you about my grandfather. He was, well, he was special. Until I was seven, I wasn't 100% sure if he was Johnny Cash, or if Johnny Cash was him. Seriously. And I was sharp in my early years. I'd never seen them in the same room and knowing my grandfather, seemed reasonable enough. It still does, sometimes. Even now, two, (three?) years done gone on to Jesus. And even these years gone, these new trials begun, I grieve him. Mostly in the early Spring when I'm tilling or planting. Or maybe mostly under the June sun when the tomatoes are turning. Or could be when I'm putting the garden to bed in the Fall. Well, I know I miss baking his favorite bread, overnightting it to him, and then hearing all about it for spending the money to overnight his Christmas gift.


But Enough. It's been a few years, right? But still, he was so much to me, so much of me- his eulogy was probably the most effortless and natural writing I've ever done, could ever hope to do. As easy as showing a picture, I swear. And now, sitting here, completely filthy and sweaty and sunburned from working in the garden (Big redheaded boy picked the first pepper this past week--how 'bout that?!) I am remembering him, his words, his work, his faith, and sweet Jesus, his garden. Now that was a garden. And he told me once that everything I ever needed to know about God, about life, I could find in the garden, if I just knew how to look. And he took the time to teach me how to look. Wish you would have known him, but since wishing ain't having, here is what I knew of him, what I saw of him, and what I got from him. This would have been in late January, so the seed references are off. I know how annoying that can be.


It’s just about time for me to start my summer seeds where I live. Most people don’t realize what a rather delicate and time-consuming process it is, and frankly, I’m glad that God handles the vast majority of the plants in the world because seeds are a pretty tricky thing. The soil has to be just right and the light has to be perfect, and the humidity has to be balanced, and even with all that, it’s a long and quiet wait before you see growth. A gardener has to have faith that seeds will turn to plants. It might be the dead heat of summer before you get something even a little bit like what you’d hoped for, and by that time, well, you’re tired and your hands ache with the effort. Still, it’s always a magnificent piece of God’s handiwork poking out of that dirt and you are glad.

My grandfather was a gardener. He was careful and patient in his garden and he knew when to give and when to hold back and his plants were, to my knowledge, inevitably fruitful and strong. When I taught at Sparrows Point, I’d sometimes stop at Kenwood avenue on the way home and Mom-mom would wipe her hands on her apron and bustle around for the cookie tin and Pop-pop would walk me to out to his garden so I could see how well, how lovely, how strong it all was. How his faith and his hard work had paid him back once again.

Amazing.

Now, I think that most grandfathers are gardeners, because even if they never no much as dig in the dirt, they plant seeds. Our parents raise us, our church and schools teach us, but it is our grandfathers who provide the good beginnings—the history, the knowledge, the wisdom, the rich soil and good light we will need to flourish and be productive.

In this respect, Pop-pop was a particularly gifted gardener. He taught me how to pick a crab and he took me to Memorial Stadium. He brought home hops from the brewery so we could see and smell how beer begins from a plant. How Baltimore, these small things, how silly even, but what better way to teach me my beginnings—where I come from—where I keep my roots?

We all know that by nature, my grandfather was not a patient man and he did not suffer fools. We know this because he was generous and unquiet with his opinions and he had a knife-sharp certainty in both his morals and his faith. In spite of his nature, tho, he was had the wisdom to be patient and steadfast and diligent with that which he knew would grow.

I burned through five years of college in no particular direction and my grandfather, who never even got to high school, watched. No sign of growth there, heaven knows, but I think he had faith and he waited. So when I came back to him, asking that I might go back to school to become a teacher, he made sure that I understood two things about an education. First, he had been his own teacher, having left school in the 8th grade, and while this was a hard way to come by knowledge, it had graciously taught him the second thing that I needed to know—that knowledge was the single thing, the only thing that no one, no depression, no war, no job loss could take away. My grandfather, who had known mostly survival and sacrifice in his own youth—my grandfather, who had never known the luxury of youthful drifting, apparently had faith that if he sowed the seeds and kept good watch, I might grow. Might yield something worth his efforts.

I’d like to think that I did do that--if only because I learned from him that my students, and most people in fact, will flourish and grow at the hands of a loving gardener.

There are so many memories. So many family events and discussions and lessons and transitions, well, it’s a long and arduous list and I don’t believe that Pop-pop would be happy to sit through it, so I cannot rightly ask similar of you. I think that if I say to you only that my grandfather was an extraordinary man—dignified and practical, tireless and faithful, strong and focused, that you would know him just as well as if I’d passed around our family photo albums.

Neither he nor I ever imagined that we’d be so far away from each other. In our phone conversations, he would ask about my gardens and I would mostly complain about the clay-thick soil, or the drought, or even how little time I had for the labor we both loved so dearly. His response never changed. He said, “every year, you work a little bit more, clear a little bit more ground. Learn from your mistakes and look to the next season to make it better.”

His words were not meant to be left in my dry and rocky Alabama garden, I know. His words were what he practiced in his gardens, but also in his family. He gave us roots, he tended our growth, and he watched us bear fruit. All on a gardener’s faith.

I will grieve him deeply, especially in this season when I’m tending seeds and tilling ground and teaching my own children the lessons of a useful and fruitful garden. Surely, surely, I know I cannot spare him—I will mourn him harder as the days lengthen and warm and I know I will more readily stumble in my garden for the loss of his practical knowledge. By then it will be the dead of another Alabama summer and my own gardener’s faith will be nothing but spindly and sorely tested by those rocky dry patches out back where I think my gardens should have been.

But in that time, when nothing is growing and hope is a rainstorm that’s nowhere in sight, I will be more patient. I will stop and I will bless him because I know, I have seen how easily miracles can spring from the tired and calloused hands of a faithful gardener.

Next year I’ll try again. Clear more ground. Learn from mistakes and make it better.

So all this mourning and missing and emptiness is just leftover for all of us. My grandfather had a job to do. He accepted the rocky parts and learned to make them better. He did this tirelessly and well for almost a century, and now my grandfather, my beloved and watchful gardener looks out over the endless and glorious gardens in his heaven and he rests.

Millions and Millions of Mommy Months and Myriad Milestones

That's how much time has passed and what has happened since my last visit to Lahlahland. I know. Most of you have managed to self-regulate perfectly well in the interim, and for that, I say "high five!"

There's more to say, of course, and always.

Always with the saying, you know how I get. Mostly okay-ness, or at least used-to-it-ness, but nothing is that simple, no?

So we'll talk soon. I promise. How better to pique your interest? Yeah, right.

hxhxhL