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.'"