Monday, December 31, 2007

Same Old Lang Syne

I'm not sure what I really want to say today, I just have a few thoughts to share on this, the last day of 2007.

We made it through Christmas pretty well, all things told. Sometimes the mere act of re-arranging the living room to accommodate the Christmas tree can cause Stephen to react negatively - but this year it all went well. We even managed to attend a few family Christmas functions in unfamiliar locations, and, armed with a cheeseburger and fries from McD's, we even enjoyed ourselves to a degree. Stephen lost two baby teeth during the last week, and we found one of them. Who knows where the other one is...unlike a typical child, stuff like that means nothing to our sweet boy.

He slept late on Christmas morning (again, how different is THAT from a typical child?) but this year he really seemed to enjoy seeing his presents from Santa. He got into a rhythm of opening a present, examining it carefully, then trotting off to his room to play with that particular thing for a while. Then he'd come back to the tree, smile, and say "Open?" That was really a lot of fun, especially since some years he has gotten overwhelmed by all the STUFF and freaked out a bit - and therefore none of us really enjoyed the happy but frenetic moments of Christmas morning.

We took a short car trip with my parents a couple of days ago - my dad had located this ginormous hunting and fishing...PLACE. It is the largest building filled with fishing rods, camping gear, boats, etc. that you can imagine - even has its own restaurant and waterfalls surrounded by all manner of stuffed bears and raccoons and wild hogs (oh my). Anyway, we're nothing if not adventurous, and so we agreed to pile up in my dad's "grandpa Buick" and set off for BASS PRO WORLD. Stephen usually does pretty well on long car rides, but he got a bit confused when we met my parents and transferred ourselves and our stuff into their car. He settled down after a few rounds of "Winnie the Pooh," and we made the trip without too much more difficulty. We had planned to eat lunch in the restaurant there, and so while the rest of the family got a table, I took Stephen to the McD's located conveniently down the street and picked up his lunch. We got back and had a nice meal together. Let's all collectively breathe a sigh of relief.

So, after exploring and playing on the boats for a while (which Stephen loved) we piled back in the car and set off for home. About halfway through our 45 minute trip, Stephen decided he was pretty much done with the whole thing, and got progressively more cranky. We got to our car and got him loaded in, and I began to worry that he was going to think we were going to my parents' house instead of driving 25 more minutes to get home. The closer we got to home, the more my suspicions proved to be right. We arrived at home and spent the next 30 minutes dealing with a pretty full-fledged tantrum - he was tired, confused, and angry.

You see, even though I had spent most of the time in the car carefully saying, "Stephen, we're going home, okay? You can watch your videos (he had carried 5 video tapes in the car, holding them in his little hands constantly) when we get HOME," he just didn't GET it. Most days he really does understand, but this time, he was so set on Mamaw and Papa's house that he wouldn't let himself transition in his mind to accept that we were in fact going home.

It breaks my heart that seemingly simple things can cause him (and us) such grief. Yes, of course, he settles down eventually...but those moments of tears and frustration can be so severe in intensity that by the time they're over, all I want to do is dissolve into a puddle. Lately, often when in the middle of a tantrum such as this, Stephen will want us to use our hands to put pressure on his head, his temples, his chin, even his eyes...through tears he'll say "Push...PUSH." And so we try to gently but firmly press where he indicates - I remember therapists telling me in the early days that kids with autism often like what she referred to as "deep pressure." But why? Is he in pain? Sometimes it seems so, and my heart is crushed when I think of him, locked inside himself in so many ways, hurting and not able to tell me about it.

Often, when my frustration and anger starts to build, a vision of Stephen will appear on the screen of my mind - maybe he's laughing his belly laugh with a smile so wide it covers his whole face; maybe he's dancing around the living room as the embodiment of joy; or maybe I see him as he was after our recent trip to the grocery store: holding in his baby-small hands a little box of Krispy Kreme doughnuts (a favorite treat) as he walks beside his daddy toward our house, smiling with such innocence, happy to have this little box in his hands. And very often, my frustrations give way to tears - my heart swelling with unconditional love then bursting with the pain that this damned disease is so good at bringing about. This precious almost-eight-year-old and his box of doughnuts - he deserves so much more.

I recently read about some new research - scientists have "cured" mice of Fragile X and autistic behaviors. I have to delve into this more, and maybe I'll write about that later. The main question, of course, is "can autism be cured?" - and I am terrified to wish that it really can be, because I'm so scared that it can't. I've alluded several times to all the things we've tried, and I really am going to chronicle all that sometime. Anyway, maybe this new research holds the key, I don't know.

I hope with every fiber of my being that 2008 holds good things for us - new opportunities, new accomplishments, new friendships...and a cure? I'll allow myself to tentatively hope, to try to reach past the stuff that bogs me down.

We drank a toast to innocence
We drank a toast to now
And tried to reach beyond the emptiness
But neither one knew how.

We drank a toast to innocence
We drank a toast to time
Reliving in our eloquence
Another auld lang syne...

Happy New Year.

Saturday, December 22, 2007

Is it REALLY the thought that counts?

My mother always said that it was. Every Christmas she would give me this little speech before the swarm of relatives descended..."Michelle, even if [insert name of cheap and unimaginative relative] gives you a pair of socks, you be sure to say 'thank you.' It's the thought that counts."

It IS nice to be "thought of" - but to make it count I believe there has to be real and genuine care and concern (and action?) behind that thought. This year I have decided that a plain old garden variety thought DOESN'T count. It doesn't count at all.

For the last week we have gotten a small but steady stream of Christmas cards in the mail. Some with pretty scenes on the front, some with trite kiddie-type Santas...and a majority of them leave me quite underwhelmed and rather lacking in holiday cheer. Before you label me as a Scrooge, hear me out. I am TIRED of getting Christmas cards from people that I haven't heard from - literally - since the LAST ever-so-festive holiday greeting. Every single family that sent us a card knows about our life "situation," if you will...every person knows that we struggle to maintain some semblance of a family life while dealing with Stephen and his autism, and everything that goes along with that. So, please...do me a favor and stop sending us your perfectly designed cards containing pictures of your perfectly normal children but noticeably lacking in any personal word whatsoever. Half of the cards we've gotten aren't even handwritten or signed - they're impressively printed by Wolf Camera or the stationery shop, and addressed with a computer-printed address label.

If one of those charming and festive cards had even a small note tucked in ("How ARE you guys? It's been too long! We should've called, but...") then my aggravation would be somewhat less intense. Just a small personal word indicating that they might have an inkling, a clue, a notion...just an acknowledgement that our family exists in a plane that is a bit more REAL than what can be expressed on Hallmark's 2007 Holiday collection.

I didn't send out cards this year, and I found it strangely liberating. Why go through the motions, waste paper and money? The people who know and love us are AWARE of things, and I don't feel the need to send them a picture of a puppy in a Santa hat just because it happens to be December. No, the people who know and care express themselves on a daily basis, offering love and support, and that beats empty platitudes any day of the year. Has Christmas really been reduced to this? To commercialism, empty words, and money wasted?

(Well, duh.)

That's exactly what it is, and I confess that I fall into that trap pretty easily myself. It's fun to shower the people we love (especially our kids) with things they will be excited about...but I think that maybe that's okay. The problem comes when the grownups feel they have to get bunches of goodies too - and don't tell me THAT'S not the case for the typical fairly-well-to-do-upper-middle-class American. As my husband pointed out, the number of commercials for iPods and BMWs and Kay Jewelers literally rivals the number of Barbie and Transformer commercials this time of year. We spend and spend and fight crowds and fight for "bargains" - and then go home to the houses we can't really afford and send Christmas cards to people we never talk to...and sit back with smug self-satisfaction because we "reached out."

Uh huh.

I was thinking recently about the fact that this is America's 5th "war time" Christmas since the Iraq War began...not that you would know it since we're all busily and dutifully following Dubya's admonition to keep shopping, thereby thwarting the aim of the terrorists. Having watched the excellent Ken Burns documentary, "The War," on PBS recently, I was particularly struck by the stark differences between how that war affected the American people 60 some odd years ago, and how we are affected by what's going on in the Middle East now. Other than watching it on the news, DOES it affect us? I don't see any evidence that it does. And I say all that to say this: it's that same attitude - that nonchalant, "if it doesn't affect me directly it doesn't affect me" mindset - that comes through loud and clear in those Christmas cards I've been harping on. We are superficial, shallow, extravagant, and self-centered.

I can say with no guile that I quite often think about others, and that I honestly try to do my best to be a positive person in my day to day life. If having a child with autism has forced my eyes open rather rudely, then so be it. I'd rather deal with pain and difficulty and frustration and maintain my integrity than spend a lifetime never really encountering obstacles and turning a blind eye to what's going on around me.

I was at the grocery store today, moving through crowds of (mostly) pleasant holiday food-shoppers, and I had an epiphany of sorts. I was overcome with gratitude for simple things - a few days off work, the money to buy the foods we enjoy at Christmas, a small but cozy home populated with two little boys who remind me daily to enjoy every single minute of our time together, a husband who cares and supports this writing effort of mine, and an extended group of family and friends who know what it means to love and show concern.

So instead of sending out a Currier and Ives Christmas card pre-printed with artifically manufactured Yuletide cheer, I want to wish those of you who read these words of mine a joyous and peaceful holiday season. I love you all, and I couldn't make it without you.

And to the ijits who keep blithely sending us your Christmas drivel without ever thinking to actually TALK to us? Save a tree next year, and donate the money you'd normally spend on cards to charity - actually HELP someone.

I'm pretty sure that's kind of the reason for the season.


Monday, December 10, 2007

Weak and powerless

I'm standing at the end of a long, dark hallway. Bluish light spills from one open door...it flickers strangely and I lean my head against the cool smoothness of the wall, watching and listening fearfully, my senses heightened, but my head aching with tiredness.

I wish that was a description of a dream I had last night. That's what that sounds like, sort of. But it's what I just experienced about 5 minutes ago.

It's 4:08 a.m. and Stephen is awake. I first heard him at 3-something, talking to himself and squirming on his bed. Finally I got up and we began the couch-to-bed routine. Then, it was time for the drag-mom-to-the-video-cabinet routine. We already had the turn-the-TV-on-LOUD segment. I sat sleepily by the VCR, waiting for him to make his selection...he kept coming to me saying, "Watch." "Yes, watch." Pushing my hand toward the locked VCR..."Watch!" My voice breaks: "Stephen. There's no tape in there."

"Tape....WATCH!"

"Get a tape from the cabinet. Go get one....I don't know what you want!"

"Watch."

Finally in frustration I pull him down to sit beside me, grasp his shoulders and push him down to look at the empty tape slot. "There IS NO TAPE in there!"

That does it, and he plods over to the cabinet to find what he had in mind. Tape goes in, and I went back to the couch, hoping to lapse into that light sort of sleep you can sometimes get while you keep one ear open, listening for problems.

*clunk*

I jump, startled. Was that him going into Kerry's room? Go check. No, he must've just tossed himself onto his bed with a little extra force. Back to the couch. But this time I can't seem to slip into any kind of doze, so I lay there on my back, trying to decide if I want to indulge in one of those soul-searing sobbing sessions. You know the ones - you grab a pillow, hug it tight to your stomach, curl into the fetal position, and just let go. I thought that was what I needed. After all, he has been doing this a LOT over the last few weeks. It's starting to feel like a good night's sleep is the exception, not the rule. But the knot in my gut just tightens more, and I can tell that I'm not going to be allowed the temporary release of a good cry. Not this time.

I'm too pissed to cry, I think. I mean, for the past 10 minutes Stephen has trotted down the hall, walked to wherever I'm sitting, and either touched my face or brushed his lips against my cheek to give me a "kiss" - and I might as well be made of stone for all the effect those actions had on my motherly heart. I love him, and I'll take care of him...but this dark and otherwise peaceful morning, I'd rather be sleeping than sitting on the living room floor in front of the brightly lit laptop, listening to Stephen's nearly constant clicking of the channel and display buttons on the front of his TV.

Now I hear strains of a Disney song coming from his room. It's one he likes, from "Ichabod and Mr. Toad." I can reliably predict that when it ends, he'll yank the cords of the TV and VCR from the outlet, then come and get me to plug it all back in, rewind, and play again.

Excuse me just a moment.

So, that duty done for now, here I sit, unable to get relaxed enough to nod off on the couch, hating myself for practically ignoring Stephen's little caresses and smiles, hating how autism and sleep problems go hand in hand, hating the fact that in an hour and a half I'm supposed to be up taking a shower and getting ready for work. I've missed several days in the last few weeks because of sleep deprivation. I recently compared it to having a newborn - but I was just thinking that the similarity really ends with just having to wake up at odd hours. It's been a while, but I vaguely remember waking up with my boys when they were infants, and there's a world of difference between reaching into a crib, picking up that tiny, helpless, hungry little body and being able to cuddle your baby son while feeding him, then changing him and (more often than not) putting him back down and crawling back into bed - and waking up with a large and energetic 7 year old who inexplicably thinks that 4 a.m. is an ideal time for playing and watching videos.

I just don't know how to keep going. People say to me, "You're so strong! How do you DO it? I can't imagine how you make it!" And I want to grab them by the shoulders and shake them - HARD - and scream, "You call THIS making it? I'd like to strangle you just for saying that to me."

I'm bitter, and hard, and resentful. I don't like those parts of me, but they are undeniably there. I do my best to keep them around in very short supply, but right now they are in charge, and I just have to step out of the way and let them win.

I had a couple of early morning wake up calls last week - and someone (a well-meaning soul, no doubt) informed me that they were going to "pray for a good night's sleep for Stephen and for you." I smiled the non-committal smile I save for such occasions and went about my day. Stephen happened to sleep that night, and when the inquiry was made the next day, this person BEAMED, "Prayers ARE answered!" Yes, and Santa will leave us lots of fun presents on Christmas morning!

What about the millions of times I have desperately cried out while in my own personal wilderness, looking for answers, wanting to rest and recover and try to prepare for another day, only to be awakened? What about the days that I can't even begin to think straight because of sleep deprivation and tension? Why weren't THOSE prayers answered?

And spare me the "everything happens for a reason" crap. Or, the "God's timing is different than ours" argument. I need help NOW. I need answers NOW. I've had enough character-building and "that which doesn't kill us makes us stronger" material to last me several lifetimes.

I'm tired, but even in my foggy state some lyrics come to mind. I don't LIKE Maynard James Keenan, but damned if the guy doesn't write some stuff that seems to spring straight from my head. Granted he's not talking about dealing with a kid with autism, but that's okay. The universal appeal of music and all that...

Little angel go away
Come again some other day
The devil has my ear today
I'll never hear a word you say
Promised I would find a little solace
And some peace of mind
Whatever just as long as I don't feel so

Desperate and ravenous,
So weak and powerless.

From "Weak And Powerless" - A Perfect Circle

Wednesday, December 5, 2007

Deck the Halls or Save the Planet?

It seems this year you can do one, but not the other.

In a sudden fit of Christmas-y spirit, I decided to buy some of those dandy "icicle" lights for our porch. I could just see them hanging there looking all festive and stuff. So, while we were at CVS getting a birthday card, I decided to look for them. Lo and behold, there they were....and only eight bucks, too!

Next day I got ready to hang those babies up and just happened to notice the following little message on the box:

Warning. Handling the coated electrical wires of this product exposes you to lead, a chemical known to the state of CA to cause cancer, birth defects and other reproductive harm. Wash hands after use.

Umm...okay. "Wash hands after use..." This is LEAD we're talking about. Remember all the hubbub about lead paint? The recall of toys crafted by factory workers pulling 18 hours shifts in China? Oh, and apparently California is the only state that knows this dangerous fact. Aren't they great for sharing that secret with the rest of us poor saps?

Jeez. Can't a body enjoy ANYTHING anymore? I promptly returned the lights to CVS, where my new friend Apu shook his head mournfully when I explained the reason for my return. "What a shame," he said, in his wonderful Indian accent, as he put the lights in a bin to be whisked back onto the shelf for purchase by someone who doesn't read labels. You think there's anybody out there like that? Why do I suspect that a great majority of people shopping for Christmas lights aren't reading the labels? And what's worse, I'll bet there's a fair number that read it and don't even blink an eye. "I'll just wash my hands and I'll be fine."

Well, maybe so, Mr. John Q. Public...but maybe not. If I wasn't already convinced that the planet is full of toxic shit, boy, am I ever convinced now. I went to Home Depot to find clips to hold up my OLD Christmas lights (which are no doubt laced with lead, mercury, or some other toxic substance that I've ingested every year since I bought them) and I took a look around at the impressive supplies of Christmas lights - every kind and color you can imagine. And I could not find ONE box...not one brand or style...that didn't carry that same little warning.

This is bad. Okay, that's an understatement, but let's think this through. Lead is an extreme neurotoxin, and that's been well-established. Is it not possible to make Christmas lights with coated wire that don't expose us to lead? Maybe it's not - I have no idea. I suspect, however, that something about the manufacturing is easier...or CHEAPER...when they're made this way. That's not too far-fetched, is it? Make things easier, faster, cheaper...and the companies make more money. Everybody's happy, right? Except...there's the little problem of what happens after children are exposed to this crap. We really have no idea what we're touching and inhaling and ingesting on a daily basis...not unless you can afford to live a totally organic lifestyle.

My child showed dangerous levels of lead when he was tested, back when we embarked upon the biomedical "path to healing"...where did that come from? Christmas lights, I suppose. I'm worried, people. I'm worried about what we're doing to ourselves in the name of progress. Or maybe you want to call it capitalism. Or greed. It all seems to fit together somehow. The toys I buy at Wal-Mart (boo hiss) are at a low price - guaranteed! But that low, low price is possible because the merchandise is made in China...poor quality, toxic crap...but nobody does anything to stop it! Those toy recalls were all over the news, and now you can't buy Christmas lights without exposing yourself to lead! And should some honorable soul decide to start manufacturing good quality toys without neurotoxins included, they'd be out of business before they could have their grand opening sale. What's wrong with us? Seriously. What is wrong?

We have spent hours and hours of the past five years trying to get RID of whatever toxic things Stephen seemed to be carrying in his little body. You can't possibly know the torture we have put that baby through - blood draws done by incompetent techs, forcing sulphurous lead-grabbing medicine down him as he choked and cried, test after test, looking for answers... I'm not saying that we know precisely what caused him to have autism. We firmly believe that the cause is two-fold: a genetic predisposition PLUS some sort of insult to the body/brain/immune system. But in this world of plastic and chemicals and lead where you least expect it, can we really be surprised? With levels of pollution higher than ever and industry growing across our country at the speed of light, can we really profess to be shocked at the huge increase in autism and other neurodevelopmental problems over the last twenty years? Don't tell me it's because it's easier to diagnose now. Something is WRONG, and very few people seem to be willing to look at the facts.

We keep going like this and I just don't know what's going to happen. It's too late to totally "fix" Stephen...we've tried so many things and many of them did no good. I worry about babies being born today, though. I worry about Kerry's children - what kind of world are we preparing for them? Even if you think global warming or climate change or whatever isn't "real," please...listen to what I'm saying here. Why do we continue supporting businesses that allow KNOWN toxic substances to be put into the most innocent places? Poison toys and Christmas lights...is there some plot to rid the world of smart, healthy, beautiful children? It's horrible and frightening and disturbing, but it sure seems that way to me.

Last night, Stephen didn't go to sleep till about 11:40 p.m. His mama was one tired chick, and boy...was I frustrated with him. On a good night, he conks out a little before 10:00, so when the clock wound its way around to 10:30, then 10:45, I started to get worried. I wanted to just turn off the lights and go to bed, but, you see...you can't DO that with him. You can't make changes to the environment of the house without knowing that he's asleep...it can be really, really bad if you do that. All the lamps must be ON, and at the right brightness if they have a 3-way bulb. Don't put the comforter ON his bed, it must be crumpled beside the bed, and the TV must be at level 16 volume, not a speck less. Changes to these things can really upset him, and then nobody sleeps. I kept checking on him, and once I found him in his brother's room, crawling into the bottom bunk with Kerry. Then, in his room, he crawled under the bottom sheet and tangled his legs up really well...and finally fell asleep. I rather unceremoniously untangled him and rolled him over so I could fix the sheets, grateful that he was asleep at last, but so emotionally exhausted from the tension that I couldn't even stand there and look lovingly at the small boy who has finally surrendered to sleep. It's like I take a step outside myself at certain times, just to keep from going completely crazy...and I hate that. He's a child and deserves the very best of me, and there are times when I can't provide that. I love him more than my own life, and I would do anything for him, but the way that autism runs our lives makes it very hard to keep from just checking out sometimes. It's not his fault...and the fact that I sometimes feel disconnected from him BECAUSE of his autism makes me feel like an awful person. This damn thing is just horrible...and there's no one to bear the brunt of my anger.

Autism is bewildering and frustrating and heartbreaking...there are no easy answers. Did he get this horrible thing because I handled too many Christmas lights while I was pregnant? Did lead leech into his body from toys he played with as an infant? I guess we'll never know.

But we surely can do something to prevent that from happening to another little boy who deserves a full life. Can't we?

Next year, maybe we'll have an Amish Christmas.

An addendum...this story from cnn.com caught my eye:

"Christmas Lights Found with Potentially Unsafe Levels of Lead"
http://www.cnn.com/2007/HEALTH/12/10/christmas.lights/index.html

Some points of note:
"'There is no level at which lead exposure is safe,' Dr. Trasande said. 'Even at one microgram/deciliter -- the lowest level in a person's blood stream that we can detect -- that level has been associated with cognitive impairment in children.'"

"The Consumer Product Safety Commission insists Christmas lights do not pose an elevated danger of lead exposure to children. A spokeswoman vigorously criticized the CNN tests, saying that using the CPSC's methods for testing lead on blinds and toys 'is like comparing apples to oranges and is rotten to the core.'"

Thursday, November 29, 2007

Joy

I have a very short entry tonight...but one that I just had to post.

The following short (and dark and pretty much unrecognizable) video is my son, reading his first sentences. He is 7 1/2 years old, and has autism which has severely affected his ability to understand and communicate. But in this moment, he is glorious and amazing.

The sentences you'll hear him read are from "books" he can now read on his own:
A Fish and a Ball: I see a fish and a yellow ball.
A Horse and a Boy: I see a yellow horse and a boy.
A Car and a Boy: I see a yellow...(the camera battery died.)

Now, "fish" is "bish," and "yellow" is "yo-yo" - but he's doing it. He's reading. A little boy trying so hard, and doing such a miraculous thing...tonight, our hearts are full indeed.



"Although the constant shadow of certain death looms over every day, the pleasures and joys of life can be so fine and deeply affecting that the heart is nearly stilled by astonishment." ~D. Koontz

I've always loved that quote, and now...I understand.

Wednesday, November 28, 2007

Eye on the TV

Tonight the three of us (minus Stephen, who was in his room playing) sat down to watch "A Charlie Brown Christmas" on ABC. I mean, sure we have it on DVD and VHS, but there's just something about watching it as it airs on network TV, you know?

Today has been another difficult day for me personally...I've been extremely down and on edge at the same time. I'm trying to figure out exactly what's going on, but that's for another day. So...there we sat, watching the opening scene: the kids skating on the pond, with Vince Guaraldi's magnificently simple jazz in the background...and I started crying. Not loud sobbing gasps, which I'm certainly known to do, but those quiet tears that slip out almost against your will. I cried for the little girl I used to be. I can see her in my mind's eye: long brown hair, usually in two ponytails on either side of her head, big buck teeth, and all the innocence of childhood in her eyes...sitting cross-legged on the floor in front of the big cabinet TV, watching Charlie Brown and feeling the excitement of Christmas growing in her heart. I cried for the teenager that I became: a bit more confident, surrounded by friends, full of exuberance and boundless hope for the future...watching Charlie Brown at Christmastime, remembering the magic of childhood. Now...that doesn't sound too festive and cheery, but I think it's necessary, at least for me, to remember those phases of my life, and pay homage to what was overall not a bad growing-up time.

So with my tears still drying on my cheeks, I wait for the local station's interstitials to end so we can finish watching Charlie and Co....there's a teaser about the forthcoming weather report, a commercial for a local car lot, and then...a promo for the nightly local news. The grey haired-and-moustached anchor man literally BLURTS: "Coming up at ten, an update on that dog that was skinned alive." And then immediately the last segment of the Christmas special rolls.

David and I exchange horrified looks. Kerry, our nine year old, has a bit of a puzzled look. THIS is what the news promo is? They tuck that admittedly horrible but overtly sensational tag line in between segments of a family Christmas show? Is nothing sacred?

And the answer to that is sadly no. The world squashes down the beautiful, the precious, the SACRED, and celebrates the ugly, tragic, and horrifying. It's truly frightening...and it makes me angry.

I live in a world that seems to me to be starving for what is GOOD, and honest, and noble...there's a reason that people save a part of their hearts for Charlie Brown, or the corny old Andy Griffith show re-runs on TVLand. But we don't celebrate that...we tuck it away in a secret place, and go on ignoring each other, asking "How are you?" and not meaning it, and not being willing to get our hands dirty making a difference in someone's life.

Instead...we stare when we pass an accident on the side of the road. We watch movies about horrible, disgusting, GORY things to somehow make us feel more alive - I guess because we're not being eviscerated like those poor stooges in the movie?

See if this rings a bell:

Eye on the TV
Cause tragedy thrills me
Whatever flavor
It happens to be

Cause I need to watch things die
From a distance
Vicariously, I
Live while the whole world dies
You all need it too - don't lie. (from "Vicarious" - Tool)

That's the thing, isn't it? It's not so very bad if it's happening to someone else. It might even be a bit thrilling - way down inside, where you wouldn't admit it. You find yourself secretly glad that it's not YOU. Wait till it (whatever "it" is: cancer, a lost job, a betrayal) comes knocking on your door, and then it hits home, and suddenly it's a whole new ballgame.

Still...there's a part of me that won't give up, even with so much evidence pointing to the ultimate, inevitable demise of our species. I took a "mental health day" yesterday - isn't that just the cutest name EVER? - and spent a good ten minutes sitting on my couch, drinking a cup of coffee while I watched the dark, rainy, chilly day outside. The tree outside our deck is turning orangey-red and gold, and I marveled at the way the gray light emphasized the impact of the colors. And I was overcome by that ever-elusive feeling of genuine peace, of harmony and...rightness. Is that a word? Well, anyway...it was fleeting, but it was real.

How do I counterbalance that with the society of which I find myself a part? A society where men call in to local sports talk radio vehemently defending their football teams of choice, with passion and fire in their voices...where's the passion for fighting for things that MATTER? A society where children (yes, mine included) play video games and surf websites instead of, you know...PLAY...the way I did a relatively short time ago. A society where people are so desensitized to horror that a programming director slips in a tabloid-esque "dog skinned alive" headline into the break of a kids' Christmas special.

This holiday season I hope that you take the time to remember what matters...be it the Christmas story complete with Wise Men and shepherds, spending time talking...really talking...to your family or friends, or just remembering what it was like to be a kid. I'm going to do my best to have something of a Yuletide that encompasses all three, and then some.

"It really isn't such a bad little tree...maybe all it needs is a little love." ~Linus Van Pelt

Wednesday, November 21, 2007

'Tis the season...

It's that magical time of year again. The days between Thanksgiving and Christmas used to be my absolute favorite. Most of my cherished childhood memories center around family and the winter holiday season.

Not anymore.

I felt kind of down today...blue and moody, and it took me a while to figure it out. Tomorrow I only have to work half a day, the next day is Thanksgiving, and then I don't go back to work till Monday. The kids are off now...

Ahhh...there we go. The kids are out of school till Monday. Stephen (okay, so calling him "S" got old)...out of routine, off schedule, off kilter...and it all makes sense now. No longer are holidays or breaks from school something I look forward to and anticipate. Now, I dread them in a great many ways. How will we manage him? How can I possibly explain to him that it's Thursday but he doesn't go to school? This sweet, innocent boy has no concept of holidays or what they mean.

And so it goes. Yet another one of those things I file under "Things that Suck about Autism." Holidays have become yet another source of stress...not the intended time to relax and enjoy family and friends that it's kind of supposed to be. Throw into the mix the fact that we ALWAYS go to my parents' house (because nobody else knows what the hell to DO with us) and that I'll more than likely spend half my time jumping up from the table to go adjust the TV or read to Stephen on demand...well, you can see that our Thanksgiving table is rather anti-Norman Rockwell. Sigh.

Stephen will probably eat a sumptuous feast of tater tots and chips. Ugh. His poor diet is only one of the things I worry about all the time. That in turn brings to mind some of the really WEIRD things about his autism. Like...when I'm driving him to school, I can't rest my left elbow on the driver's side door. Not allowed. He reaches forward and pushes on my shoulder till I put my arm down. And, he will only eat certain foods out of certain bowls...don't dare to put the chips into the cheese puff bowl. Stuff like that sounds funny, and I guess in a way it is...but mostly it's just bizarre and occasionally mentally trying.

As I was thinking about the things I wanted to address in this entry, I was reminded of a story that was given to me not long after Stephen was diagnosed. Maybe you've heard of the heartwarming story called "A Trip to Holland"? Here's a link for your reading pleasure - people less battlescarred and cynical than moi, make sure you have a hanky handy:
http://www.angelfire.com/ky/touristinfo/holland.html

Obviously this story was written with excellent intentions. I shed a few tears over it myself, way back when. It's a charming little concept, when you think about it. Having a typical child - why, that's a trip to Italy. A charming, cultured, gorgeous place with spectacular food and wine. And, so we're told by the story, having a special needs child is like a trip to Holland when you were EXPECTING to go to Italy. Different, yes, but look around and enjoy Holland for what it has to offer!

Okay. I call foul here. I don't buy it, not anymore. I still want Italy! After more than five years of my exile in Holland, I want Italy! I don't find Holland cute or happy or ADEQUATE. The Rembrandts? They're cheap imitations. The tulips? Plastic. In short, I don't care for this place, and if I never saw another windmill or pink-cheeked lad, that would be fine with me.

And this part? "The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place." Oh, sure. Ever dealt with an autistic child with a stomach virus? How about diarrhea in a 7 year old kid wearing PullUps? Gotten a bloody nose from being headbutted by a kid who doesn't WANT to put on his coat, dammit?

I think I'll write a new anecdote..."A Trip to the Slums of Calcutta" - it won't be pretty but it'll be real. I guess the main point here is that the sunny, feel-good "Holland" story doesn't comfort me. It makes me feel guilty, and god knows I don't need THAT. If I'm supposed to somehow ENJOY Stephen's autism, then I'm out of luck. Because I don't. I hate it.

"But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."

That's just it, isn't it? There's nothing very special and very lovely about this. My son is precious and adorable and lovable, but those qualities shine through in spite of the autism...not because of it.

As we make our way into the holiday season, I'd like to wish everyone who takes time out of their day to read my ramblings a happy Thanksgiving - I hope you have a peaceful and wonderful time with family and friends. And if you're making out your Christmas list and want to include Stephen...

Put him down for a first class ticket to Italy.

Tuesday, November 13, 2007

He was behind the couch the WHOLE time

Being at best a lapsed Baptist, and at worst a SERIOUS doubter, I got a chuckle over a bumper sticker I saw a year or so ago: "I found Jesus!" it proclaimed. "He was behind the couch the WHOLE time!"

Now, to some of my church-going friends that probably seems sacrilegious. I beg to differ...if we're to take God at his word, he's everywhere. Including behind the couch.

Okay, I'm stretching it a little, but my point stands. It's a funny bumper sticker, and it exposes the problem (to me) of literally looking for God. I find evidence of God, or a higher power, or whatever you want to call it most often in nature. I'm not alone there, I'm sure.

Recently, though...I had a revelation.

Thus saith the Autism Society of America in its letter to the people: you can find God...IN AUTISM! Yeah...not so funny, that one. At least not to me. Apparently some good God-fearing mother kept looking for help and support in dealing with her autistic son, and, according to Amazon: "Listening to the many preachers on TBN and doing Bible studies, she studied Scriptures to help her understand God's plan for her child's life." TBN? You gotta be kidding me.

I can find evidence of godly things in some unique places, I'll give you that. Reading a perfectly crafted sentence in a book...listening to my son's laughter...that autumn scent in the air when it starts to get cold outside...the barren, windy expanses of desert in the heat of Death Valley...but in autism? Oh, hell no. If I was into believing in the big bad guy from H-E-double hockey sticks, maybe I'd see HIM in the vile thing that is autism. When my child is beating himself over the head in frustration, or coming at me with fingernails clawing, or screaming and crying and I don't know why, it is impossible to see anything remotely reminding me of God. I apologize in advance to any of my readers who are upset by this. Don't hear me saying my child is evil...don't even think it!

I love and adore him, and treasure him. But this THING...this disorder that has taken over his life and mine? I hate it. I detest it. Some days I don't even want to see the word autism written out. And so, in my wandering, doubting way, I am very nearly offended by some other mother telling me I can grow closer to God via my son's devastating problem.

But hold on...I was raised to believe that we can glory in all things...all things work together for good, blah blah blah. Yes, I am a stronger and more independent woman because I deal with autism on a daily basis. Yes, I am bold and forthright when it comes to taking care of my children. But to say that there's a REASON for this? It makes me sick and I refuse to accept it. Because that's what it is, people, if we stop fighting and start "accepting." Nothing will change.

Another clever quip from Amazon: "Here are Scriptures to restore your hope, strengthen your faith and show you that God has a plan for your child's life. Scriptures to promise that God is listening to your every prayer, that He is watching the work and efforts being done on behalf of your children. Scriptures that will empower you to be strong and steadfast, reminding you that with God, nothing is impossible."

"God has a plan for your child's life." Oh, man. That one just sticks in my craw, sayin'? How is it supposed to comfort me that God PLANNED this? God planned that my baby would get the chicken pox from his brother, and that he would wake up this past Friday night crying and wanting me to scratch his little head? God planned that he would drive me completely MAD at my mom's, adjusting the color and tint and brightness of the TV in endless cycles, then screaming till I fixed it so he could do it all again? God planned that?

And this is supposed to be COMFORTING?

So, where does someone like me go for comfort? That's a tough question, and one I can't really answer fully. To be honest, the whole autism thing is really hard on a family, and on a marriage. You get mad, but there's no one to take it out on...so you take it out on each other. That's inherently wrong, but it happens. We find our moments...few and far between...we feel like a family when we manage to go to the park and get home without incident. That precious half-hour between when S. FINALLY goes to sleep and me falling asleep - I should treasure that time more. Every time S. says a word, especially when he actually communicates - that's a source of comfort. When my oldest son comes to tell me he loves me...on his own...there's another source.

We just hold on. To each other, to friendship when we can find it, to music, to books, to traveling when we get the freedom. We find god, or peace, or tranquility, in every tiny scrap of space and time we can.

"Though we might have precious little, it's still precious." ~N. Peart

Wednesday, November 7, 2007

Reality Bites (or, The Great Cosmic Joke)

I knew it was hanging there, waiting. I mean, that's the way I've come to live my life...knowing it's up there. It's always just a matter of time till it falls.

Anybody who knows me knows how much I love shoes...but I've gotten away from shopping for them (when I have the funds) and moved toward expecting big heavy ones to fall on my head. I've fooled myself into thinking that I'm helping myself somehow by living with the expectation that the worst is going to happen...that by expecting bad things, I'll either be relieved when they don't happen, or resigned when they do.

But it doesn't really work. Maybe I'm finally accepting that being a pessimist just isn't worth the energy. Because living that way tends to kind of suck the happiness out of your day...

Oh, the shoe...yeah, it clunked me on the head yesterday. Things had been going deceptively well, and I had relaxed a bit. I actually had a day and a night to myself last weekend. D. and K. went on a Scout trip, and my mom graciously agreed to keep S. for the night. It was heaven just to sit in my house and do whatever I wanted. Solitude is a rare and beautiful thing, and I soaked it up. Then, so far, we've had a pretty good week, sprinkled with the usual minor disturbances, but nothing big. Just as I was about to BREATHE for a change, yesterday afternoon my cell phone rang. *cue ominous music*

It was S.'s teacher. She had been acting a bit odd lately, missing days of school and so forth - and we were suspicious. I thought she might be pregnant...but it turns out she's leaving after this term of school. Her husband found a job 2 hours away, and so...that's it. I felt the light go out of the otherwise beautiful day. This woman has been a godsend, if such a thing exists. S.'s teacher in his kindergarten year was a helmet...I mean, this guy didn't have a clue. We struggled through that year and school was a constant source of stress for everyone concerned. But then they awarded him a pink slip, and we moved on. Then his current teacher arrived, and after a week we were elated by the way she handled the classroom and encouraged by her quiet strength as she dealt with S.'s behaviors. Since then he has made tremendous progress. In the year and half he's been under her supervision, he has come to ADORE going to school. As I've mentioned, he is reading now, and doing amazingly well.

And she's LEAVING.

I can admit that my first reaction was one of anger. My life revolves around S. Our whole family dances to the rhythm he improvises. So how in the hell does his teacher think she's going to just up and leave us, high and dry? She can't live her life and go with her husband! Where are your priorities, lady?

The rational part of me (hey, it's small, but it's there!) knew that was just a dumb way to be. But I let myself feel angry, because I've learned not to squash any feeling that needs to be felt. It's just not good for you, you know? But I kept it in control and muttered the necessary, "Well, we're happy for you guys, but we're sad to see you go." (Translation: How could you DO this to us? School was the one thing I didn't worry about!)

But now it IS time to worry. Or, gritting my teeth while trying to be more positive: it's time to be concerned. It's time to put on the gear and get ready to do battle. To advocate for my child, as the PC-patrol puts it. Forget how I don't WANT to do this again. Forget how I'm sick and tired of having to fight for things. Remember S. and his progress, and make sure that continues. I've put in the phone calls to the higher-ups in the school system. Now it's a matter of waiting for them to get around to calling me back so that I can begin to make sure everyone involved has S.'s best interests at heart.

Still, I find myself shaking my head over the cosmic joke that is my life (to borrow a phrase from a friend of mine). When I told my mom about the teacher leaving, she said, "I swear...it's like we get one thing taken care of and something ELSE happens." Ain't it the truth, Ma?

It begins to get very difficult to make sense out of life when you try to see cause and effect. Some people seem to skate through life, blissfully unaware of how their actions (or lack of) can impact others. You know who I'm talking about...the people whose lives never get touched by any real tragedy, or the people who seem to stumble into windfall after windfall, never doing anything to earn what they have... I, on the other hand, was raised as a good Baptist girl. If you're good, God will bless you. If you're bad, God will curse you. Simple! It's a fantastic way to grow up, isn't it? God is a big mean man who's just WAITING for you to screw up. So I obligingly became a perfectionist. The better I did in school, the prouder my parents were. "She never gives us any trouble," they'd pontificate to their friends. Oh, dear parental unit, I got into plenty of trouble. YOU just never knew about it. Talk about pressure. The point is I taught myself from an early age that as long as I did the "right" thing, or at least it LOOKED like I was doing the right thing, everything would be all right. And it was. For a while.

Now, I've learned some lessons. Life has jerked me around plenty. All that goodness I stored up? Not worth a hill o'beans...at least not for the purposes I had originally intended. At heart I'm still a "good" person...I'd like to think I have ethics, integrity, and stuff. But I discovered, as my favorite writer-who-happens-to-be-a-drummer, Neil Peart, did, that the "you DO good, you GET good" philosophy doesn't hold water. Sometimes...a LOT of times...you do good, and you get kicked in the teeth. Being a whole person, living life fully and well, and doing my best to be a good person...I can't do that to see what it'll get me. We've learned that's not the way it works, haven't we? No, you do that because...well, just because. The alternative is unacceptable. It feels wrong, it's negative. It's a bummer, man.

So now what? Do I give in and become a dried up old cynic? I've got plenty of reasons to do that. Some days I literally glory in being as snarky and pessimistic as I can. But ultimately that's just a mask I wear. The real me comes out, and at the craziest times, too. Last weekend when I was by myself at home, making myself breakfast, I found myself humming. The simple domestic act of making eggs and bacon, and sitting down in my (temporarily) quiet living room made me HAPPY. Either I've gone off the deep end, or...I still have hope. I have a tiny little sanctuary deep inside...a place that I can go, and know that all is well. Not forever. Maybe not even for a day. But for an hour, I felt peace.

The other night I was reading to S., and I stepped outside myself long enough to look at him...really LOOK. His shining hair, tousled in that little boy way, his eyes bright and focused as he listened and supplemented my reading with his own pronunciations...the way he laughed with pure delight when we got to a funny part, and then put his arm around my neck to hug me. Wow...that's the stuff, you know? My heart resonated with his at that moment, and everything in the universe seemed to be exactly as it should be. It only lasted for the briefest moment, but...it was real peace. I recognized it for what it was.

That's enough to convince me that I really have made the choice to go through life leaning more towards hope than desperation...not because I've been "good" and earned anything, but because that's who I am, for whatever reason. I will always and forever grieve the boy that S. could have and SHOULD have been. I will always be sad that autism has lowered its shadow over our lives. Many days, I know I'll still want to give up and get fitted for that straight jacket I've been eyeing for a few years now. (If you're reading this and I'm sitting in a corner somewhere talking to myself and drooling, I'd like the green one. Thanks.)

Call it karma, or good will, or being a person with integrity - it doesn't matter. I have to live my life, living with what I've been dealt, doing the best I can. Some days I won't do well. Some days will be horrible and nasty and heart wrenching. But I'm going to stop looking up, waiting for the shoe to fall, or the sky to fall, or one of those big iron safes from Looney Tunes to fall. I'm just going to live in the moment, and meet things as they come. I need my energy for other things. Like playing with my sons while they're still young enough to care...or taking that English class next semester.

Or shoe shopping. :-)

Thursday, November 1, 2007

Hanging Ten

Halloween with a twist...that's what we had. K. invited a friend to join us for the festivities, which was a good thing. S. doesn't GET Halloween - he loves "The Great Pumpkin," but it gets watched year-round without any recognition of its significance.

So, as you would expect, we try to adapt this holiday to work for us. We squeezed into the car and drove 30 minutes to my hometown...a little college town struggling mightily to retain its small-town vibe - the pharmacy chain store that took over an entire block juxtaposed with the quaint little bookstore that probably sells 3 books per week. My mom's church was hosting a charmingly benign "fall festival" (don't call it Halloween, you heathen!) and we descended en masse upon the crowd, hoping for the best.

I admit that I almost always approach such situations with hands clenched, braced for trouble...it's just so hard to know how S. will react. K. and his friend took off, happy to be on their own for a bit. S. made the rounds of the games and activities, quickly deciding that this wasn't what he wanted to do. We almost caught a break when we thought of looking for an orange Tootsie Pop for him - no substitutions, please - but this elusive piece of candy was not to be found. So, I took him into the church nursery and got him calm with repeated renditions of the Thomas song "Gone Fishing" interspersed with the "Winnie-the-Pooh" theme song. Singing isn't my strong suit, but hey...in this case it calmed the "savage beast." :-)

The older boys eventually exhausted the fall festival opportunities, and so loaded down with candy, we devised tactical plans for the next part of the evening. My mom took S. to swing by McD's for his usual. We took the older boys to the Mexican restaurant we had decided on, ordered food, and apparently the planets were aligned because our food arrived just as my mom and Stephen did...and that, folks, makes for a pretty pleasant meal - as far as we're concerned.

My mom took S. to her house, and we took K. and friend trick or treating...and that was fine, and fun, and reminded me constantly of my own childhood, running down those same dark streets with costume dragging and pumpkin growing heavier with candy. Even in those happy moments, though, there's always a twinge of "if only." If only that was S. running behind his big brother...laughing with him and trading candy in the backseat as we drive to another street...

We picked up S. and started for home...the older boys quiet and tired from the evening's adventures, and S. chattering and singing in his language. It was late and I didn't want K.'s friend to be the beneficiary of any errant slaps from the young gentleman in the booster seat...so
I sat between my sons in the backseat, just in case S. got rowdy. K. leaned his tousled and slighty sweaty head on my shoulder, and at that moment I was conscious of how fiercely I love this boy whom I've watched grow from toddler to little boy to bigger boy...I buried my nose in his hair and reveled in that boy-smell...grass and shampoo and fresh air and sweat. Then, a small slightly sticky hand reaches from the other side of the car and touches my face.

My thoughts spin wildly, like a needle on a compass. If only...if only THIS boy was like his brother. If only... But I have to stop there. Not going down this road again. I turned to face him and am rewarded with an ecstatic smile, and I'm aware that my face mirrors his. When this kid is on...he's ON, and it's tough to resist him. I know in my heart of hearts that I would lay down my life for him just as quickly as I would for his brother. Two such different children, both inspiring the same undying love and commitment.

And that brings me to surfing. You're with me here, right?

Okay, that was random, but I do have a point. That commitment to parenting I mentioned - it often gets called into play. You don't want to drive 30 minutes to eat school cafeteria food, but you do it because your child wants you to...you don't want to get up at 3:00, but you do it when they wake up and can't sleep...you go the extra mile for them. And, apparently, you drive across the country to take your autistic child to surfing camp!

What?

I'll admit that my cynicism has grown by leaps and bounds. I'm as skeptical as you can be about some of these "miracle" cures. But when D. and I sat down the other night to watch "Nightline," only to be regaled with the "heartwarming story" of this surfing camp in California that caters to autistic children - my BS meter went crazy. It's not that I think autistic children shouldn't surf...IF THEY WANT TO. Hell, let them ride a unicycle while juggling. Let them roll around in the grass. Those things do not a miracle cure make. We watched while screaming children were wrestled into lifejackets, lifted bodily and carried, shrieking, into the waves. Some of them eventually got up on the boards. I even saw a smile or two. But one precious boy who had been forced to go out with his "surfing buddy" came in, and as his buddy walked him up to his parents he was asked if that was fun. "Y-y-yes...but please don't make me go back! PLEASE!!! Please take me back to the Best Western..." And then the smug and smarmy Nightline correspondent continues to intone how this activity calms the children...about how their parents are often "amazed" at the difference the hour of surfing makes...

Come on. My son loves the pool...and we spent as much time there as we could this past summer...and yes, he was calm and easy to care for while he was there. Does that make chlorinated swimming pools every parents' answer for their child? He also loves to play in fresh, foamy dishwater. Should I start a "Bubble Sink" camp?

Forgive me, dear reader, for what I know seems like bitter vitriol dripping off the page. But I've grown tired of these "human interest" stories about autism...they are misleading, they often offer false hope, and they just plain don't tell it like it is. Not really. Not for families like mine. I don't want some perfectly coiffed journalist smiling at me from the TV, his face carefully composed in that "I care and I am passing on quality information" expression, telling me that the latest fad/treatment/diet is helping SO many kids.

I've shared this movie clip with friends and family...THIS is what autism does to a family. Watch it and understand. http://206.252.155.61/media/d_200603_EveryDay16x9_512k.wmv

It's about survival, adaptation, rolling with the punches...not hanging ten, dude.

Monday, October 29, 2007

Oh, good grief

I've always felt a kinship with Charlie Brown.

It seems like I've been trying to kick the damn football for years...only to have Lucy snatch it away at the last minute.

AAAAGGGHHHHH!!!!

Preach on, brother.

Lucy takes on many forms. She's a shapeshifter. You can't trust her, and you can't always recognize her. Get married, have a baby. Fabulous! He's a golden child who embodies joy and fulfillment. Hey, let's try this again. Another baby. Hmmm...a bit different, but so far so good.

Until Lucy snatches that ball away. The baby...he's not talking on schedule. Wait, now he's not talking at ALL. He's acting weird. YOINK. It's autism. Falling flat on my back, the wind knocked out of me...

But then Lucy shows up again...this time, she's got a signed document! There are treatments for autism, and we're gonna fix that boy right up. That ball is going to go SAILING down the field. I back up, fix my face into a determined expression, and take off at full speed.

YOINK. (Pssst. The treatments don't work. At least not for us.)

Splat. Funny thing about that document. It was never notarized.

Sigh. Lying on my back, staring up at the sky, wondering when I'm ever going to learn not to trust Lucy...

This morning, my darling baby boy woke up at 5:30 a.m. I ignored him for a while, hoping he was talking in his sleep. But no such luck, and I creep down the dark hallway only to find out that his PullUp leaked again. I dig around in the boxes of winter clothes that need unpacking (mental note: DO that sometime) and find something for him to wear. By now it's time to get K. up to make sure he has recovered completely from the chicken pox that broke out last week, in spite of his vaccine at age 1. Then the epic struggle begins...to turn on the lights and start the day. S. falls apart..."Off. Off." The transition from night to day is one of the hardest for him. K., ever the solid rock of the family, takes it all in stride. He ambles slowly down the hall and eases into the day, as usual. The next ten minutes are not good. I mean, like, really bad.

S. climbs into recliner. "Off!"

"No. It's morning. Time for school soon." A tantrum ensues. Pick him up, haul him down the hall to his room, where no lights are on. His dad steps in to help keep him corralled in there long enough for K. to get ready in relative peace.

He escapes. More crying. "Off. OFF!"

"No!" Back to his room, where he collapses onto the bed flailing and crying. Somebody knocks on the door. It's 6:45 a.m.

Oh, LOVELY. It's the lady from downstairs, the Melodrama Queen of Valley Drive. With back of hand laid on forehead, she intones with Shakespearean tragedy..."Can't you KEEP him quiet? He woke me up from my sleep!" Oh, forgive us, your majesty...we are but peons trying to deal with the impossible...please, continue to yell and curse at your own children so loudly that we can hear every word...and forgive us for the trespass of having a child with this CURSED disorder. "I complained and they (the office staff?) told me I could call the police...but I'm not going to do that, because he's a child." Oh, thank you, Our Lady of Mercy...thank you for not having our 7 year old autistic son arrested. Whatever.

At that moment I hated her and everyone else in the world. I wanted to scream, to tear out my hair, and then run as fast as I could away from it all. D. was literally VIBRATING with anger, but somehow we both reigned ourselves in and responded to her ridiculous attempt to chastise us. I finally closed the door in her face and finished getting K.'s snack ready with shaking hands.

D. walked K. to the bus stop. I put S. in his room for the 23rd time, and went to dry my hair. In the interim, the acceptance switch clicked in S. and when I came out of the bathroom I found him on his tummy in the living room, happily reading a Thomas book. That's how fast it changes. One moment, chaos, and the next, he's humming to himself and giggling. My emotions take a little longer to readjust.

Well, it's almost Halloween, so to continue with my Charlie Brown theme, let me end with this. Today, at least, I feel like in the great Trick or Treating game that is life, everybody else got candy or bubble gum or a chocolate bar.

I got a rock.


Monday, October 22, 2007

Some world views are spacious

Mine's not, though. I realized this weekend how incredibly SMALL my world has become...the incredibly shrinking life.

(Oh, and props to Neil Peart for letting me borrow that phrase in the title. It's from "Grand Designs." Anyone who knows me knows of my admiration for Mr. Peart's writing abilities. I'll probably quote him a lot because I like him and he's cool. He ROCKS, man...he just...ROCKS. And he didn't really let me borrow it...I guess I stole it. I don't think he'll mind.)

Anyway. Life as I know it revolves around S. Sometimes it gets really old. We have to hunker down like generals over maps and plan the simplest drives to make sure we won't pass the golden arches at an inconvenient time. Are we going someplace he's never been? What if he freaks out? What if there are breakable items there that we can't afford to replace? What if (gasp) there's a VCR he can get his hands on and fast-forward/stim to his heart's content? Have we packed an adequate supply of the 5 things he will actually eat?

The incredibly shrinking life.

Friends fall by the wayside...they (whoever THEY are) say that friends are supposed to stick close through the tough times. Well, THEY didn't know anybody with an autistic child, I'm quite sure of that. Friends don't know what to do with families like ours. They make vague promises of help, but somehow they never materialize. There's no such thing as a simple "drop the kids off here and spend the afternoon however you want." Okay, sure. But first you'll need to enroll in our simple 16-week course called "How to survive an afternoon with an autistic child...and live to tell about it!" Call now and get "Changing the Diaper of a Seven Year Old the EASY Way" - FREE!

Our social life consists of time spent with family...people who know us and who have long since autism-proofed their homes. We love them...we are grateful for them. But it's not nearly enough. I miss hanging out with other women, and doing artsy-crafty things...I miss worrying about how my home was decorated. Now housecleaning consists of shoveling the Thomas trains out of the middle of the hall with my foot as I stumble through to start another day.

My husband misses out on the friend factor as well. Guys have a hard enough time expressing themselves...and when one among them has real problems, it seems they don't know how to handle it. They want to fix it, and while I really wish someone could, they can't. And it just seems hard for men to let each other talk and mourn. That sucks. At least my friends will cry with me and not immediately try to come up with solutions. Sometimes all you need is another presence...someone silently lifting some of the burden and holding it with you for a while.

When you view the world through a tunnel, as we do, focusing intently on what is RIGHT in front of us, dealing with each minute problem that is actually HUGE...it's hard to understand other people and their problems (many of which seem trivial and ridiculous). I find that I have ZERO tolerance for people who won't use their brains. Every day I see people squandering good health, healthy children, financial resources, and it makes me sick. Bitter, even.

But then life shrinks a little more, and the tunnel vision refocuses...and life crystallizes. Get through this day. This minute, sometimes. Savor the quiet moments, rare as they are. Watch for the victories, tiny as they may be.

Sometimes, the simple act of watching two brothers walk side by side on a path through the woods, as brothers have done for generations, widens my worldview. Just a little.


Friday, October 19, 2007

Random Thoughts

I'm sleepy today. Another morning up at 3:00. I feel about as alert as Asa, that old bank security guard on the Andy Griffith Show...remember him? Always dozing in his chair by the door... And now I'm thinking about how every time I watch Andy Griffith I start wishing I lived in Mayberry in the early 1960s.

God, I don't know where all THAT came from. I guess it's all a part of wishing for a simpler life, and even though Mayberry is corny, it's simple.

I dreamed last night that S. was lost...and I had forgotten the dream until I saw this story on CNN.com about an 18 year old with autism who wandered away from his family and was lost for four days. http://www.cnn.com/2007/US/10/18/hiker.found.ap/index.html

I can't even begin to comprehend what this kid's parents went through. The article says the boy has the mental capacity of a three or four year old, which is close to where S. is now (he is physically age 7). The thoughts of my baby wandering around in the woods, in the cold, alone...my gut tightens up just imagining it.

On a brighter note, S. is trying harder every day to use words to communicate. Yesterday when I got home, my mom took me to his room and said, "S., tell Mama what you want." My mom wasn't able to understand him. He looked at me and said, "Ach juggleboo." I pondered. "Wait...he's asking to 'watch Jungle Book'!" :-)

That was fun. And the look on his face when he realizes that he has successfully communicated is worth a million bucks.

Well, back to work now, in my dazed and confused state. Maybe I'll write more later when the old brain cells have kicked in.


Tuesday, October 16, 2007

We survived fall break

Usually a few days out of school means a few extra days of chaos in our family. K. loves having time off, S. responds less than favorably to the lack of structure and schedule that seems to be inherent in our family/home life.

The boys had Friday, Monday, and today off, and so far...we're doing okay. There have been moments, certainly, but no 45 minute tantrums that leave me feeling wrung out and hopeless.

Today has me in a reflective mood...I think I'm finally coming to grips with how I REALLY feel about the whole "autism treatment" notion. When S. was initially diagnosed, we knew nothing about biomedical interventions. We focused on early behavioral intervention and I threw myself into it wholeheartedly. I'd like to think that my early efforts bore some fruit. It took two years for S. to grasp the pic sym concept, but that has certainly come in handy over the years - now that he's becoming more verbal we rely on pics less now. That's a good thing, in my opinion.

But, as most loving parents do, we keep looking for more, better, faster ways to "cure" our son. I put that in quotes not because I doubt that it can happen, but because I think it is a rare occurrence, and an outcome that we don't really expect. Not anymore. The first biomed-flavored book I read was Karen Seroussi's Unraveling the Mystery of Autism. I devoured it and immediately began thinking of how I would save my son and we could put all this nasty autism business behind us. We did the diet...and what a struggle that was. No gluten, no casein... We also visited the only DAN! doctor in our area, who agreed that removing these things from S.'s diet would help him. I went to health food stores, often spending $50 on ingredients to prepare ONE thing for S. - I don't begrudge the money, but the problem was: IT DIDN'T WORK. Not for S. He got worse. There was no dramatic improvement in behavior. He became listless. He got diarrhea. His hair stopped being shiny, and his face was pale. During this time we also had bloodwork and an EEG done, on the DAN! doctor's orders. THAT was fun. A couple of weeks later his nurse called to tell me (in what now seems a calculatedly gentle tone) that S. was having seizures. I panicked and cried, but she assured me that this was GOOD news. Seizures could be treated!

Suddenly, the emotional rollercoaster that would be my ride for the foreseeable future kicked into high gear. First the diet and it's promises failed us. But now? Now we could attribute S.'s behaviors to seizures, which could be treated, and we'd have our son back! I was overjoyed and couldn't wait to start him on the Lamictal. We started the drug per the doctor's orders and sat back to watch the magic.

Except...IT DIDN'T WORK.

We finally thought to seek a second opinion. We went to a pediatric neurologist who repeated the EEG, then told us that S. was NOT having seizures. The spiky activity on the readout, he said, would be alarming if the test results were from an adult. From a child whose brain, even though hampered by autism, was still developing, though - the activity was normal. He also noted that the dosage of Lamictal S. was taking was too small to have any real effect.

You might wonder why we didn't pursue some kind of action toward the DAN! doctor for what seemed like negligence or even outright deception. The neurologist told us that reading EEG's can be very subjective, and that while he felt that most of his colleagues would agree with him, a case could be made to defend the first doctor's assessments.

Another thing to note here: BIOMEDICAL TREATMENTS FOR AUTISM HAVE NOT BEEN PROVEN TO BE EFFECTIVE. There is lots of anecdotal evidence...enough for parents like us to run ourselves crazy trying to get the next test, the next supplement, the next treatment for our child. You never want to look back and wish you had tried something.

We've tried. We continue to try. We delved into the world of chelation as well. Let's talk about that another time, shall we?

For today, I rest in the knowledge that we have tried everything possible to help our son. Some of these things have helped. Some of them have done nothing. Some caused us huge amounts of stress and resulted in no change. Parents like us will continue to look for answers. The snake oil salesmen have perfect marks with us...we are desperate, tired, and close to despair. There are people out there offering hope in a bottle, or in a hyperbaric chamber, or in a special diet. I'm certainly glad there are children that have supposedly been helped.

I'd be lying if I didn't admit that I wish my child was one of them.

Wednesday, October 10, 2007

A golden morning

Today started like many others. I found S. asleep on the couch and hoped he'd stay asleep till I got back from walking K. to the bus stop. He did, and we got dressed and ready for school. He still loves school - weekdays are his best days because the routine works well for him.

His teacher approached me a couple of weeks ago about trying to start teaching him sight words, and hoping that he could catch on and eventually learn enough words to be able to read and enjoy simple books on his own. I knew he had that ability because of the way he matches up his Thomas videos with the right boxes. So of course I told her to have at it.

Every few days his home note has been saying, "Did reading today...learned another word!" which is totally exciting. Along with the other three million things on my mind at any given moment, this fact made me smile vaguely, happy that HE is happy.

Until today.

This morning I followed him into class, watched him hang his backpack on the peg labeled with his name, and his teacher said, "S., let's read for mom." So he went to the table, sat down, and watched as she opened up the workbook and began to indicate words.

"Hursh." (horse)

"Yewwow." (yellow)

He got distracted and she gently pulled his attention back.

"Cah." (car)

"See."

"A yewwow cah."

"See a hursh."

My baby...my son who bewilders and aggravates and laughs and dances his way through our lives...is reading. He can do this. He has learned at least 10 words in as many days, and he retains them. The child who refused to hold a crayon till he was 5 is READING at age 7. Knowing that someday he may be able to sit down and enter the world created by a book is a golden, golden gift to me. He may never carry on a conversation, but here...HERE is a world he can enter.

I cried without shame as I watched him. This is a day to remember.

Tuesday, October 9, 2007

An auspicious beginning

What a fabulous time to begin "blogging," as the young people call it. It's 4:17 a.m., I've been up since 2:30, and I'm feeling creative.

Yeah.

It's another one of those "S wakes up after four hours of sleep and I have no idea why" early mornings. Sadly, this is a regular event. I woke suddenly, immediately braced...was that him? Maybe I was dreaming. Another giggle from his room and I can't deny it any more. He jumps up, turns on his TV, then heads for the living room and the couch. I wait in bed, praying (yeah, right!) that he's autism-sleepwalking and will crash on the couch. Those are the lucky times. Waiting...

I doze. Wake up...listen. Waiting...

Thirty minutes pass and I'm starting to get warm and comfortable again. I think he's asleep.

Except he's not. Sudden delighted giggles from the living room wake me up completely, and I throw back the covers, close everyone else's bedroom doors, and trudge down the hall for another early morning session with my sweetly aggravating son.

Let's see...so far he has played with Thomas trains in the dark, and we vainly searched for the 2nd Cur-bel (Clarabel) - at least no tantrum when we didn't find it! Yay. He has watched a snippet from a Thomas video three times...with a deft flick of the wrist he unplugs the TV and VCR when he's done. I know...so dangerous. But the outlet cover I installed foiled him for all of a day. Now, he sits in the recliner behind me watching me type this. It's an hour and a half till I need to get dressed and started for the day. God, I hate this.

I've been reading several blogs lately, and noticed that little "create a blog" link in the upper right corner. I guess I'm just sleep-deprived enough right now to think this is a good idea. :-)

I could use a place to vent and store information...so I guess this is it. I hope someone who's looking for a real, honest, middle-of-the-road look into a family's struggle with autism (and yes, every day IS a struggle) might find something worthwhile here.

Thanks for reading.