Mirage

After an especially trying weekend, I sought what I refer to in my head as my “haven” –  propping myself up against pillows on my bed, in the bedroom farthest from the TV, the living room, the kitchen, and the noise Stephen generates constantly.  But, he found me, flopping onto the bed cross-wise, one babyish hand finding my foot and patting it in that instinctively sweet way of his.

He’s stretched out, jabbering away, his t-shirt too short (as most of them are now), and I can see the jagged pink stretch marks on his belly…ugly reminders of his poor diet, his huge pharmaceutically-induced appetite, his inability to understand limits.  Autism, the wild beast that invaded our lives a decade ago, persists in trying to tear us apart, and it has left its mark on my son’s skin as it tries to claw its way out.  This evil, wrong presence – a million miles away from the happy, feel-good kind of autism that has parents lauding their child’s “differences” and appreciating their “uniqueness” – has terrorized my family, and there’s no weapon that can be used to defend us.

We have bound ourselves together to fight it, but inch by inch it creeps in.  We are trapped, isolated, a bizarre island in a sea of unhappiness, and it hurts.  It’s lonely.  It’s impossible to understand unless you live a similar life, and there just aren’t many people who do. 

At this very moment, as I type, Stephen is back on the bed, his round, soft cheek resting against my arm.  He giggles.  “Band-itch,” he says.  I am silent, thinking.  “Band-itch, peeze.”  I have no idea what he’s saying.  My heart breaks for a child who can walk and eat and sleep, and in most other ways is unable to conduct his life as a human being…trying to talk, staring earnestly into his mother’s eyes as he sweetly says, again, “Band-itch, peeze.”  As I shrug and say, “Baby, I don’t know…” he once again gives up, not able to communicate, and so he retreats back into his mind, jabbering about Thomas or Percy or whatever.  I got lucky this time.  So many times this kind of non-communication results in screaming fits.  What a wilderness of confusion his brain must be.  It shatters me to imagine his bewilderment with the world.  I’ve been a soggy, crying mess over the last 12 hours.  Two more tears trace paths down my face, and Stephen reaches out a finger to catch a drop off my chin, and he wonderingly looks at it, then wipes his hand on his shirt.

The future scares me.  Stephen’s puberty looms like another monster, an unknown enemy lying in wait.  Our older son starts high school in a week – how is he doing, really?  He told his dad last night that “this stuff” does get to him, but he doesn’t show it.  He just goes downstairs and pounds on his drums.  Have I failed him?  Is he destined to run far from this home that I’ve tried in vain to make tolerable or even happy at times, taking memories of chaos and noise and pain?  It is more than I can bear.

For years, I have worn a silver band engraved with “HOPE” on my right hand.  I bought it at the first autism conference David and I attended.  Those snake oil salesmen/vendors are nothing if not purveyors of hope, mainly of the false variety.  Regardless, I have always gained a miniscule particle of strength when I’d glance at the ring on my finger.

Today I took that ring off.  Right now it hurts more than it helps, because hope seems elusive, mocking me as it swoops in only to disappear when I reach for it.  Oh, there are times when my eternal, cockeyed optimistic soul believes that happiness is possible: the scent of newly mown grass that transports me to childhood, Stephen’s wild dancing and laughing moments, Kerry’s enthusiasm over music, David’s constant ability to make me laugh till I cry, a perfect sentence in a book I love…

But my well of hope has run dry, for now.  I’ll find a way to replenish it, but right now it’s empty.  I’m afraid, I’m discouraged, I’m out of ideas.

Years ago Kerry gave me a necklace that has a charm on it: “#1 Mom.”  He honored me by considering me a great mom, but I have a hard time convincing myself of it during dark periods, like now.  Today I put my hope ring on that chain, and hung them both back on a hook.  In sight, not packed away, but not to be worn…not while the beast snarls at the door.  I’ll keep what’s precious out of harm’s way, with the vestiges of stubborn endurance I have left.  We may be hanging on by a thread, but in my heart I believe the thread is made of something just strong enough to withstand the attack.

Tested

I’ve done a considerable amount of thinking over the last few days.  As much enjoyment and excitement as I feel about my quest to eat real foods…I don’t think I’ll change the name of this blog.

On that long-ago October night, when I was sleep deprived and up (again) with a 7 year old Stephen, when I thought maybe I’d start a blog, the Pink Floyd song that lends its name to this site drifted into my head with its perfect, delicate mix of despair and hope. I’ve always hoped to use these pages to share my honest and oftentimes gut wrenching feelings…to share my inside thoughts with an outside world.

In today’s cultural climate we’re inundated with images, sounds, advertisements, subliminal messages.  We communicate via computer or text message.  We are, as MIT professor Sherry Turkle's book states, Alone Together.  I’m almost as guilty as my teenage son of using these media to “connect” with other human beings.  A case in point: one of Kerry’s friends “texted” him to invite him to a movie.  Kerry is notoriously bad at checking his phone, so he missed out on the fun.  When I said, “I wonder why he didn’t just call our home number?” Kerry told me later that his friend “didn’t even think of that.”  We are alone, together!  The very words streaming from my fingers are destined to be published on the web…a desperate, even pitiable attempt to throw a lifeline out, to see if anyone is out there in a world that seems farther and farther away from my isolated little family unit.  This blog has always been about crying out, about seeking validation, even approval.  Every time I click “publish,” I wait anxiously to see if anyone notices, or better yet, comments.  For a minute or two, I feel…important.  Valued.  I matter.  What I say matters.

I do not mean to imply that over the years of this blog, the thoughts torn loose from a heart sore and heavy with pain are somehow untrue, or embellished in any way…or God forbid a raw bid for pity.  No, like any card-carrying introvert, I simply find it much easier to express myself “on paper.”  But, would I find it nearly excruciating to sit across from any of my readers and express these thoughts?  Undoubtedly I would.  Would I fidget and stammer over my words?  Would I say the same things I say here?  Am I wearing the inside out?  Why is it so hard to look each other in the eye?  I can’t blame it all on my Myers-Briggs personality type. Why do we hide behind the very devices that purport to encourage a sense of community?

For years I’ve been a member of an online bulletin board dedicated to the band Rush.  At first it didn’t really occur to me that it might be important to avoid building an internet persona – a character that I could customize to be whomever I wanted her to be.  Isn’t the internet the perfect playground for branching out, being a little different, creating the person you wish you were?  It can be, and for many people, that’s almost all that it is.  But when I found myself carefully crafting sentences, trying to be extra clever, or meticulously searching for just the right picture of me or my kids (!) to really drive home what a supercool person I was…it hit me.  To borrow from Turkle again: I was experiencing what is called “presentation anxiety” over how best to demonstrate to the internet the image I was unconsciously creating.  It’s like a mask we wear…and as long as we never meet or connect in the outside world, the illusion stays intact, and we pretend to ourselves that we’re involved in each other’s lives.  Does this encourage true community? 

Luckily, early in my years of making “internet friends,” I was able to meet some of them in person – and I knew I wanted to be the same person online or in the flesh.  My point is that the temptation is there, to make yourself seem different in some way…because it’s safe when you pretend to interact but in reality hold others at arm’s length.  I hope the very dear friends to whom I’m referring would agree that we are truly friends in every sense of the word, and I’m grateful for that.  This isn’t just about long-distance friends you’re not likely to see very often, though.  Ever seen someone you know in the store and gone out of your way NOT to run into them?  Be honest…

I must come clean about a few things, while I’m being so transparent – these confessions are part of my self-induced therapy.  I can no longer moan and groan to myself in my journal about the extra weight…and then eat so many Double-Stuf Oreos I lose count.  I can’t complain about feeling friendless when I grab my phone to text someone (keeping that safe buffer zone in place) instead of calling and hearing their voice.  I can’t whine about being miserable at work when I know in my heart I haven’t given it my all each day.  I can’t look myself in the eye in the mirror, pitying myself as a poor dear who has SO much on her shoulders, and then do nothing to take care of myself in the way that I deserve.

I’ve come to the conclusion that being honest on the internet is a true test of one’s integrity and sense of self, regardless of whether you ever come face to face with your target audience, be it friends at a Rush concert, or the neighbor down the street that you’ve “friended” on Facebook but never walk down the street to, you know…talk to…

As I continue to strive toward a better life, I want to commit to myself that I will also make it a more honest life.  I will tell the truth about what I’m feeling.  I will tell the truth about what I’m eating, about how I’m caring for myself.  I will not craft an image.  Like other writers before me, I long to have you, the reader, know me.  I want to tell you on these pages the thoughts that my voice could never fully express.  But on the happy occasion that I do see one of you face to face…I don’t want you to wonder what happened to that person who wrote all that stuff on the internet about autism and real food and finding meaning in the life you lead.

So this blog will continue to be my venting spot, my recipe book, my dream repository – with a renewed sense of truth running throughout, a thread stringing together the beads of my days and my years.
I’m wearing the inside out.

Blogspot Tags: autism, honesty, integrity, living a full life

Summer

Stephen is in his room squealing/shrieking at the pile of videotapes and DVD cases that he feels must be strewn across his floor.  The door’s closed and still, every sound makes my bones hurt.  Summer has only just begun and already I wish I could disappear.

It’s not a coincidence that my prolific writing output stopped right about when school ended.  God, I hate this time of year!  Other families relax into the nothingness, glorying (as they should) in the freedom, the vacations, the trips to the lake.  I crumble into misery, along with my family.  Stephen’s behaviors multiply in intensity.  The easygoing guy of August through May disappears, and along with him any real sense of family harmony.  God, I hate it SO MUCH.  I can’t get a straight answer from anyone about his summer services, and he’s too old or too affected by autism to go to any of the day camps I found.  Unbelievable how families like mine are just dropped like hot potatoes when the school year ends.  And they extended summer, which is clearly an attempt to push me over the edge.  School was going to start August 9.  Now it’s August 20.  Just shoot me.

I have been doing very well with feeding myself and my family with real foods and trying new recipes.  Maybe I’ll get a chance to share more foodie stuff later.  I hope so – those plans and possibilities have been a lot of fun for me.  I’ve found something I’m really interested in, that I enjoy thinking about.

Hopefully I can get back to something fun soon.  Right now I have to go see what I can do to help my son deal with the misery of summer.

Edit to add this...here is what we have to wade through to walk into Stephen's room lately.  It ain't easy.

In the beginning

So, I thought I’d start by just going over a few of the initial changes I’ve made in my kitchen.

Once I finally wrapped my head around the whole “good fats in moderation are good for you” concept, the first thing I did was buy whole milk instead of 2%.  I can hear some of you gasping.  I felt completely BAD buying those first couple of containers, like a food cop was going to jump out of the dairy case and cuff me for trying to clog my family’s arteries.  Obviously, some folks don’t do milk or dairy, and that’s great, but in my family we do like milk, so…why whole milk?  Well, it tastes really good.  The idea behind this whole food concept is to up the quality of your food, enjoy it slowly and thoroughly, and you eat less.  It’s true.

So change #1: whole milk.
I’ve been buying organic milk for several years now, either this brand or Horizon.  But I always bought 2%, occasionally forcing myself to buy skim for my own consumption.  Blech.

Last night before bed my stomach was a bit empty.  I poured maybe 4 ounces of milk into my Bama jelly glass and sipped it over the next 15 minutes.  It tasted amazingly good, and it filled my stomach just enough to let me go to sleep feeling comfortable.

I suppose the next change is really more of a series of smaller changes.  I took a few of the recipes I found in the books I’ve mentioned (French Woman Don’t Get Fat, The Fat Fallacy) and tried them.  We had some pasta with leeks and parmesan cheese, drizzled with plenty of olive oil.  Delicious!  And along with that I prepared some pork loin chops.  I still have some work to do if we want to have those again because to say they were a bit tough is being generous.  But, we also had another pasta dish another day, this one with lots of zucchini and diced tomatoes, again with a good amount of olive oil and some basil.  We had some whole wheat bakery bread toasted with a slathering of the new butter I’m buying: Kerrygold Pure Irish Butter.  Ingredient list? “Pasteurized Cream, Salt.”  Yes, it has to be left out for a few minutes to be truly spreadable.  This is not hard to accomplish.  You set it out, you do some of the other stuff that needs doing, and when you check it again, it’s ready.  It is a beautiful creamy yellow and tastes so good.  It even says “milk from grassfed cows” on the package.  Yes!  That’s exactly the kind of REAL FOOD I’m looking for…

So change #2: try new recipes that are heavy on the vegetables, and don’t skimp on the good fats to increase their palatability.  (Just learned that new word from yet ANOTHER new book: Low-Fat Lies, High-Fat Fraud).  Tonight we’re having bean burritos.  In the past, when we wanted burritos, I’d buy a couple of cans of store beans, plop ‘em in a saucepan, and voila!  But today, I put a bag of rinsed and sorted pintos in the crockpot with a good amount of salted water (and I used coarse sea salt), two whole garlic cloves, a tablespoon or so of chipotle chili powder, about a teaspoon of cumin, and some bay leaves.  When I get home I expect them to be tender and ready to eat along with some monterey jack cheese that I’ll grate right before we eat.  We’ll have some of the fresh salsa that Publix sells in the deli (all natural, lots of veggies, no weird ingredients). I’ll let you know how they turn out.

The last change that I’ll list for today is more of a behavior than a food choice, per se.  I am slowly learning to savor the food I eat.  It took me by surprise when I started consciously putting down my fork between bites – because I realized that I usually shove food in like I’m being timed.  Also, I’m simply chewing my food.  Tasting it.  Enjoying it.  I’m not saying I’m trying to chew a certain number of times, but I’m actually using my teeth, consciously noticing the flavors and textures.  Another surprise: when I took note not to put more food in my mouth while there was still the bite I had just taken in there.  Seems crazy, I know, but when I began to pay attention, I came to see that I was eating too fast and not even coming close to appreciating what I’m putting into my body.

Change #3: slow down and savor it.

As far as finding some substitutes for the store bought things we’ve been buying for years, I have two things to share today.  Stephen loves Chunky Chips Ahoy cookies.  Kerry does too.  I’ve been known to indulge, as has David.  So, I figured I’d find the best chocolate chip cookie recipe I could and make it with the best ingredients I could afford.  So, I made these: Whole Wheat Chocolate Chip Cookies from the wonderful blog 100 Days of Real Food.  I recommend the recipe heartily.  Next time I’ll be doubling it so that we have a treat that isn’t packed with chemicals.I used organic whole wheat pastry flour, good unsalted butter, and pure vanilla extract.  I used Nestle semi-sweet morsels because I had them on hand already.  And these turned out beautifully!  David and Kerry thought they were great.  The only drawback was that when Stephen asked for “Chis Ahoy” and I smiled brightly and brought over one of these beauties, he picked one up, sniffed it delicately, and said, “No.  Chis Ahoy peas.”  Ah well.

The other new recipe I worked on this week was a homemade granola.  Since I’ve been eating more yogurt (whole milk with cream top) I remembered how good granola goes with yogurt.  So I studied some recipes and kind of cobbled together my own.  To make about 4 1/2 cups total, I used 1 1/2 cups of rolled oats, 1 cup of sliced almonds, 1 cup of unsweetened shredded coconut, a 1/2 cup of walnuts, about 1/4 cup each of flax seed and sunflower seeds, a scant 1/8 cup of brown sugar, 1/4 cup pure maple syrup, a drizzle of honey, and about 1/8 cup of coconut oil, warmed slightly to liquefy.  I mixed all that together, spread it on a foil-lined cookie sheet, and baked it for 1 hour, 15 minutes, stirring every 15 minutes so it browned evenly.  The house began to smell SO GOOD after about 30 minutes.  The end product was golden, crispy, and smelled delicious.

I tried about 1/2 a cup of this for breakfast, with a generous amount of whole milk.  And let me tell you…it beat any cereal I’ve tried.  It was so very good!

Well, this has grown very long.  I guess I’m still pretty excited.  I’ve always loved to cook and this feels like such an adventure.  Thanks for coming along!  More to come!

The weight of the world…

It’s on my shoulders.

And by “weight” I mean literal pounds.  While at times I’ve certainly felt the figurative weight of the world (stress, worries, more stress) from time to time, for the last few weeks I’ve become very interested in the way people eat.  Most specifically the way my family eats.

This interest began years ago when I ran across a book called French Women Don’t Get Fat by Mireille Guillano.  It’s a native Frenchwoman’s take on the so-called “French Paradox.”  The media has predictably taken this idea and spouted such nonsense as “The French Paradox is a myth,” or “So these people eat ALL THE BUTTER and croissants and red wine as they want and don’t get fat?  Sure they do.”  Well, that’s not the paradox at all.  Traditional French eating is about celebration, about savoring the BEST food you can afford – slowly, and not stuffing one’s face with a bunch of chemical compounds masquerading as food.

And these mysterious food-like products are what many Americans typically ingest.  Go to the grocery store and take note of all the “healthy” foods you see: low-fat, fat-free, high protein, sugar-free.  Then look at the list of ingredients.  Chances are it’s a paragraph that’s chock full of words requiring a consultation with chemistry textbooks.

I’m about to finish another book called The Fat Fallacy that examines the “healthy” food-like substances that Americans have consumed in ever-increasing quantities in the last 30 years, all the while the obesity rates in the U. S. climb steadily upward.  The author, Dr. Will Clower, is a neurophysiologist (and a native Alabamian) who spent two years living and working in France – and who came home healthier and lighter (as did his family) than when they left America…all from eating real food: whole milk instead of watery skim, cream instead of low-fat Cool Whip, fresh vegetables instead of canned everything…

So, my personal goal is to reduce and eventually eliminate non-foods, while increasing our consumption of real, honest, and hopefully local foods.  To quote Michael Pollan (The Omnivore’s Dilemma): “Eat food. Not too much. Mostly plants.”  It just makes sense.  Is it going to be easy?  I can readily admit that it is not.  I spent nearly double my normal amount of time (but not double the money, which is interesting) at Publix recently, reading package labels and searching for the best products I could find.  It took me a full 10 minutes to find a box of crackers to go with my organic hummus (same price as the regular) that had fewer than 25 ingredients.  I hope to be able to find better food not only at my normal store, but discover other sources along the way.  The little Organic Harvest store in Hoover, even Whole Foods (if I’m selective).  The point is – there IS better food out there, and I’m going to find it without going bankrupt.

I plan to take this blog in a decidedly different direction, focusing on my “real food” goals and discoveries.  While I have grown tired of repeating myself about the problems that autism presents, you will still find mentions of autism here – because how could I not talk about the elephant in the room?  And the greatest challenge by FAR is going to be trying (and perhaps failing) to find healthier alternatives for Stephen’s extremely limited selection of menu items.

I’ve already tried a few new recipes and ideas, and soon I’ll share those, with some reviews and pictures of the finished products.  My goal is to eat BETTER foods – not to be a vegetarian, not to give up sugar or sweets completely, but to eat whole foods along with occasional treats that also happen to be real foods…to savor my food, to eat wonderful things that are good for me, and to stop when I’m full.

Today, we started watching the HBO documentary “The Weight of the Nation.”  Very eye-opening.  I wish every Alabamian could watch it.  Or, would watch it.  It has reinforced my resolve to just do BETTER.

I’m excited about this.  It feels good to do something so positive.

Working at Perfekt

For the last few days, I’ve been working on Step 4, which cleverly leads to Step 5.

• Make a searching and fearless moral inventory of ourselves
• Admit to God (there HE is again), ourselves, and another human being the exact nature of our wrongs.

No big deal, right?

Yeah.  I’ve been dreading these buggers since I first saw them, sniveling and cowering down the page from the quite helpful and good-feeling-generating Steps 1-3.  If there’s anything I am most assuredly NOT good at, it’s looking honestly at myself, with no filters in place, finding some of that dark stuff that doesn’t generate the good feelings, and then…admitting to HP (that’s “Higher Power.”  Or Harry Potter, depending on the day), myself (who?) and…gulp…another human being when I’ve made a teensy error in judgment.

The workbook I have gave a template of sorts that could be used to make a chart for the moral inventory, along with some pre-printed behaviors, actions, thoughts, etc. that might spark some searching and fearless…searching, I suppose.  And if there’s anything I love, it’s making charts and using my favorite pen to fill them in.  So far so good.  Then, I started getting into the meat of the thing.  If taken seriously, looking at oneself with this kind of scrutiny feels uncomfortable at best, horrifying at worst.

Now, I’m afraid that I’m not quite transparent enough to list all my foibles here for general consumption.  Let’s just say that I’m facing up to some things about myself and my behaviors that range from embarrassing to gut-wrenching in intensity.  I’m way too dependent on others for establishing my value as a human being.  I’ve gotten a lot of mileage out of the victim/martyr complex – I’ve mentioned that here before.  That one’s tricky, because, yeah…autism happened and it sucks.  But I digress.  I have way too many crazy kinds of “beliefs” about myself that don’t really bear up under factual examination – but the thing about beliefs is that sometimes you have some that don’t make any sense at all, and yet…you still act on them as if they’re law.  I’m finding it’s okay to question them. 

I could go on, but I’ll spare all of us from my laundry list of crap.  Part of the process of the inventory is not only to enumerate these things, but also to look for ways they manifest in your life, and to assign a number symbolizing the level of pain that particular thing has caused.  In looking over my list, I can see why I’ve often felt burdened, weighed down, and worthless.  My scores are off the charts.  Of course.

Which brings me to step 5.  In my own way, I’ve been confessing this stuff to HP, to David, to friends, to therapists – anyone willing to listen (and some who were clearly cornered and couldn’t get away) – for years.  I’ve beaten myself up, sworn to change, blah blah blah…and then settled right back in.  Sure, there ARE some really and truly painful things I’ve done, some that took years to work their way to the surface – but in my heart I believe I have admitted those to the relevant parties and also to my mental health professional.  I think I’m covered in the “admittance of wrongs” department for the most part.  The larger point here, for me, is that I have often tried to hide my wrongs from myself, somehow perpetuating the very notion that I am still working on being perfect.  How does a person live for nearly 39 years and still think that’s POSSIBLE, even in the remotest stretches of the mind?

Denial is a powerful thing, and I have ridden that wave as far as it’ll go.  I’m so very imperfect.  I’m broken and backwards and mixed up – but SO IS EVERYONE ELSE.  Even those people who seem to have it all, don’t.  Oh, they may have stuff I don’t, but then I have stuff they don’t.  It takes all kinds, right?  The great irony here is that people like me who have persisted in gazing longingly at the model of perfection mess up 84% more than people who just LIVE.

(I made up that statistic.  I did read somewhere that perfectionists actually make MORE mistakes, but I can’t remember where.)

It’s funny.  I originally named this post “Step OFF” (homage to Seinfeld there) because I was kind of frustrated with these steps.  As I’ve written these words, though, I’m seeing things a bit differently.  It’s good to “come clean” to myself, and to recognize the futile nature of trying to attain perfection.  That realization, along with the tools of steps 1-3, help me to feel as if the escalator has moved ever so slightly in an upward direction.  So, I changed the title – credit to Geddy Lee for this one.

Working at perfekt

Got me down on my knees

Success to failure

Just a matter of degrees

*Note: thanks and admiration to my dear friend Jim, who made my snazzy new blog header. You, sir, ROCK. Thank you.

Paying the price

Because I’m a glutton for punishment concerned parent who wants to stay informed about things, I subscribe to a Google “autism alert.” It’s a daily email that collects stories related to autism and gives you links to conveniently click ‘n read.

Most days, I give it a scan – every few days I’ll click on a story if it sparks my interest.

And then, there are days like today, when I saw this:

There’s so much to take in, just from the blurb. You have to take it horror by horror. Mother kills son. Mother kills autistic son. Mother strangles her severely autistic son. So she could get rest. She had marital difficulties.

Okay, let me say this right up front, lest I come across as completely morally superior. There’s a part of this that I understand.

Read that again. I understand. To a point. Having a severely autistic child is horrible at times. I’ve written enough here that most of you have at least a general idea. When it’s bad, it can be very, very bad. I know what it’s like to think of desperate measures. I believe I once shared a story about driving Stephen to school while he grabbed handfuls of my hair and yanked with all his might, screaming unintelligibly, and about how I kept thinking that maybe I’d just floor it and head for the next concrete block wall I saw… The mom in this story tried to kill herself but didn't succeed.

So, I get that things get so bleak and so dark and so heartrendingly excruciating that you find yourself wishing it would all go away.

There’s a line, though, isn’t there? As parents we all toe that line from time to time – even parents with “regular” kids. But it’s about reaching inside yourself and stopping before you settle in on the other side of that line. Because it’s a one-way street over that line…you spend too long over there and you’re not coming back.

Here’s where my soul absolutely ached, though, as I read through the story. In one letter the police found in the hotel room, the mom had written: “It is funny. He was laughing when I was strangling him. That is when I knew he was happy. I had to do it because now no one can point fingers at him.”

Dear God. That child, completely unaware, laughed while the person entrusted with his care ended his life. That innocent spirit was so disconnected from reality that he didn’t even know to fight to save his own life. And the mother saw that as an acceptance, as validation of her actions. In my mind I am in that room, listening to the otherworldly laughter that we hear from Stephen all the time. I am chilled to the bone.

So while I understand the pressures, the insanity, the misery, and the utter desolation…children like this boy – the very same age as my own son – who cannot comprehend the world around them must be cared for with the most compassion we can muster. It isn’t easy. It’s rarely rewarding. It’s just damned hard. You don’t get to rest sometimes. You DO have marital problems. But caring for those who cannot care for themselves constitutes a higher calling. We don’t care for them because they ask for help, because many of them have no voice. We don’t care for them because in the end it’s all worthwhile – sometimes it falls short. We don’t love them because they love us.

My son was born into my life and the life of my family, and we are charged with his well-being. That’s the beginning and the end. We may not always be able to provide his care personally; it’s hard to know that now. But, as hard as it is and as exhausting as it can be…what we do, we do because it is right. If character is exemplified by what we do when no one else is looking, then caring for a severely autistic child even when no one is looking counts just as much.

We will pay the price, but we will not count the cost.

Baby steps to sanity

Remember Bob and his baby steps? Baby steps to the elevator, baby steps to four o’clock…

So apparently I’m taking baby steps on the road to recovery. I mean, sure, at times they’re steps that the tiniest little micro-baby in the world would take but…I feel the trend, in general, is upward.

In general.

I’m hovering between steps 2 and 3 on my 12-step journey. They’re related, and since these are THE GOD (AS YOU UNDERSTAND GOD) steps…yeah, I’m spinning my wheels a bit. Officially, we have:

1. I’ve come to believe that a power greater than me can restore me to sanity.

and

2. I’ve made a decision to turn my life and will over to the care of God as I understand God.

As far as God/religion/spiritual stuff is concerned, those of you who’ve read my stuff before know that on a good day I’m a seeker of sorts, intrigued by rituals and spiritual matters…on a bad day, I’m one of those doubters who just can’t quite let go of the idea of God (mainly ‘cause I’m scared of the lightning if I do). So where does that leave me on the staircase of codependency recovery?

This morning as I was meditating (which means sitting on Stephen’s bed since he migrates to the couch every night, sleepily drinking my coffee and scribbling in my journal) I came to the conclusion that I can confidently say that I DO believe in a “power greater than me.” As simplistic (naïve?) as it looks when I write it out – I believe in the transforming power of unconditional love. Is it possible to love in that way as humans? Well, probably not, but it’s a noble goal toward which to work. Anyway…how that belief ties in with my idea of God is still a bit murky, but as I’ve mentioned before, the few transcendent experiences I’ve had (mostly involving nature/landscapes/outdoors) combined with this idea about love as a powerful force is going to have to do for now. Don’t try to pin me down because I can’t get any more specific than that. (Defensive much?)

So with one foot on step 2 and the other on step 3, right now I’m pretending the steps are really an escalator, and I’m cruising along, moving upward but also staying where I am, for the moment, whilst things settle in and become a bit more…comprehensible. Loving as unconditionally as possible seems like a great place to start – and what’s more, the first person who is benefitting from this notion is ME. I’m also trying to love those around me without conditions – no expectations, no projecting of my teen self onto my teenaged son – and it really is freeing in a way. Love them as they are, and that includes yours truly. No false hopes, no unrealistic goals, and (this is vital) no condemnation for failure to be perfect.

Whew. That one hits me where I live.

Looking at #3 through my custom filter, I see “turning my life over” in this way: it brings to mind the admission from step 1 that some things (and all people) are out of my control. To some extent, what is, is. While the way we live our lives may influence people or events, ultimately, sometimes things are going to happen. We have the choice to either have a big old freak out (holding up the mirror now), or, try to breathe, get perspective, and make the best choices we can to deal with what comes, hoping that choosing a higher path will (eventually?) lead to a higher place. [How this fits in with evil things that happen to innocent children, why some people beat cancer and some don’t, why bad things happen to good people is not clear at this time, and I doubt it ever will be. Which frustrates the hell out of me.]

As I’ve come to look at this blog as a confessional of sorts, right away I’ve got to admit that last night I pretty much embodied the exact opposite of the serene, Zen being I’m espousing in the prior paragraph. After a long day in the office, pushing papers around as I try to feel some sort of meaning, I was a bit blah. A nice supper, a couple of eps of M*A*S*H, and a hot bath (during which Stephen popped in and entertained himself and me with a Blue’s Clues songfest in the mirror) later I was feeling a bit more like myself.

Then it was bedtime. I try to time Stephen’s pull-up changes so that it’s just time for a fresh one as we do our bedtime routine. This time I missed the window, and walked in to find that he had leaked onto his bedspread and top sheet. Clever gal that I am, I just whipped those two things off the bed, grabbed a nearby comforter to replace them, and patted myself on the back for being so resourceful. Stephen continued watching YouTube on his iPad, and we finished the bedtime routine. But he kept squealing in a way that only Stephen can – he grasps his hands in front of him and squeals. LOUDLY. Sometimes he gets cranky like that when he’s tired and will eventually calm down…

I went back to the living room hoping to hear the sudden silence that means he’s given up fighting and gone to sleep…only he didn’t. I finally went back in, saw he’d thrown the comforter in the floor, and somehow surmised that he was unhappy without his tucked-in sheet and bedspread. So, what to do at 10 p.m. when you can’t do laundry fast enough to fix the problem? You grab the Glade Fresh Linen spray, spritz the sheet and bedspread, and go on with your life. Sorry, folks, that’s life with autism. You spray, and go on. Putting the covers to rights helped, but still…there was squealing.

I went back to my chair, trying to relax…yet every time he let loose another cry, my muscles twitched and it felt like an electric shock. My mind ramped up…What do I do now? What next?

Then, it came to me. I knew exactly what I needed to do.

Nothing. It was out of my control at that point. I had helped him in the only ways I could, I had hugged him, loved him, and I had to let it go. I forced myself to relax, to stop anticipating his squeals, to know that it really was going to be okay. I realized, maybe for the first time, I REALLY realized that, while a few times things really have gotten difficult (stomach viruses, 3 hour tantrums, etc.) most of the time things really DO turn out okay… Well, okay in a kid-with-serious-autism kind of way.

When I finally laid my weary head on the pillow, I felt the weight of the struggle – not only the struggle to get Stephen calm, but the fight I’m waging both for and against my self. I fell asleep almost instantly and slept soundly. I’m fighting to let go, to use my energy in increasingly positive ways, to strive for a higher place – and finally, I can see that the benefits of the effort are worthwhile, and I deserve no less.

We gather together

Remember the Coke commercials where people joined hands and sang joyfully about sharing a coke and keeping the world company?

Humans are social animals, present cynic-with-low-self-esteem company excluded, and it seems that now more than ever, we are anxious to find common goals around which we can gather and celebrate.

The more whimsical and fanciful example I have would be the hoopla over last Friday’s Royal Wedding (and yes, we capitalize it…it’s just. that. important.). Leading up to the events, I honestly didn’t care. I didn’t! I’ve grown up from that 9 year old who watched in awe when Diana became a princess, dragging that impossibly long train down the aisle. Brits and their monarchy – I mean, come on! Who gives a rip?

Then, in spite of myself, I caught a glimpse of Kate’s dress when I innocently opened up a web browser. (Thanks Yahoo). And...she looked beautiful. Radiant. Classically lovely. Grace Kelly-esque. So what if I then typed in “www.bbc.com” just to see how Westminster Abbey was decorated –it was totally so I could scoff at the pomp and circumstance over those silly Brits and their figurehead royalty.

But as I watched the bride walk down the aisle, something changed. I couldn’t help myself. I didn’t want to be there milling around in the crowd waving a Union Jack, or even in the Abbey itself. I didn’t suddenly think that the Queen and all that royal stuff is a great and meaningful thing. No…I was just swept away by the beauty – a pretty, elegant young lady, a handsome prince in his uniform, beaming at his bride, British reserve be damned, the timeless glory of the Abbey, the soaring music…

And it occurred to me that I (and maybe a few million other people) are simply starved for beauty, for civility, for the ageless grace of love eternal. People gathered to celebrate this – and it ALMOST didn’t matter what they were celebrating at that point. Do some people take it a tetch too far? Of course. There are always excesses (see the commercials for the knockoff copy of the engagement ring for $19.95 – comes with a certificate of authenticity!). I decided to stop berating myself, and simply enjoy the pageantry and stop telling myself what a waste it was. Of course there are better ways to spend millions…pro football, for example, is ridiculous, but I’ll save that whole rant for another day.

As people got back to normal after all that wedding business, last night the President came on TV to tell the world that U. S. Navy Seals had killed Osama bin Laden. It’s big news, no doubt, coming years and years after the search started.

And the celebrations began…outside the White House, at Ground Zero in Manhattan, and, I presume, all around the world. Some pundits declared that bin Laden’s death would bring closure to families affected by his evil. I don’t know…closure is a funny thing. Maybe it does give comfort to think that justice has been served – but how many others are standing by to take his place? To avenge his death? Is the “war on terror” really over? These and other questions didn’t matter to the revelers of last night. People gathered, spurred to excitement by a common cause. Humans are starved for connection. These celebrants didn’t get on Facebook, by and large. If at all possible, they wanted human contact – to look into someone else’s eyes and smile, and whoop and holler.

In my own state, volunteers and donations continue to pour in for victims of last week’s monster tornadoes. It’s remarkable to see people go into action when help is REALLY needed. Think of 9/11, of Katrina. And these storms that wreaked such havoc…times like these bring out the very best in humans as they seek to connect, to soothe and comfort, to help in real ways. We have it in us to be so kind and compassionate and giving. Why does it take such devastation to bring it to the surface? Shouldn’t we live in such a way each day, striving to choose the highest choice, recognizing the divine nature of every human we meet?

But, we don’t. Wall Street tycoons steal outright, and continue on their merry way, causing a different kind of destruction and chaos… People hate each other for things that shouldn’t matter. Kids are mean to other kids – often to the point of driving a teen to suicide. This dichotomy, this duality of our nature…it confuses me, and makes me think I’m going nuts at times.

Yearning for community…it’s a big part of the human condition, and as much as I try to pretend otherwise, I want it, too. I write this blog, not only to vent and to neatly fold the thoughts from the tumbling clothes dryer of my mind, but to share. To put a piece of myself “out” there, and hope that someone else says, “Yeah…me too.” The power that’s in those two little words can’t be underestimated. “Me, too.” I understand. I feel what you’re feeling. I know.

Knowing that someone else shares your experiences eases the burden – even if they’re still IN that situation, struggling along with you. It helps to know you’re not alone. And people look for opportunities to share, both good and bad times.

When I tell you that right now I’m struggling to get my sweet son to understand that “Something To Eat” is not an actual food or name of a restaurant, that he found a button labeled “Something To Eat” in his iPad communication app and is now obsessing over “Somefing to EAT!”, that I have placed approximately 5 (at last count) sticky notes that read “Something To Eat” on various foods around the kitchen…someone out there (hello Karen!) will go…”Oh gosh…I know what you mean. I’ve been there.” And that helps. It soothes the agitation. It binds me together with other human beings.

There will always be dark nights. My soul, I imagine, will look rather weary and battle worn by the time it’s all said and done. I will still cry, and rail against the unfairness of it all. But, a little at a time, I’m learning that I’m NOT alone. And it means more to me than I can express.

(A parting note: at the age of 9 I had “Charles and Diana” paper dolls, bought at the little bookshop in my hometown. Do I hear a “Me too” out there?

No?

Oh well. I guess sometimes you’re bound to be the only one.)

Guidance Systems Break Down

So...I lied. I AM going to mention autism today, but later in the post, so just hang on. We saw the author of this book, Dr. Miguel Nicolelis, on The Colbert Report the other night. (Note: Right now, The Colbert Report > Daily Show - Colbert's writers are brilliant.) From the publisher's promo: "In this stunning and inspiring work, Duke University neuroscientist Miguel Nicolelis shares his revolutionary insights into how the brain creates thought and the human sense of self—and how this might be augmented by machines, so that the entire universe will be within our reach." And while I truly and honestly DO want paralyzed people to walk again by utilizing a brain/computer connection and an Ironman-esque suit (one of the applications Nicolelis brought up)...if researchers are able to dig into the brain and figure out what impulse leads to what movement and so forth... Why in the hell can't someone, somewhere figure out what's up with this whole autism thing? And FIX IT immediately if not sooner? In blurbs I've read about Beyond Boundaries, I see mentions of things like: "Imagine living in a world where people use their computers, drive their cars, and communicate with one another simply by thinking," (from Daily Kos) and while this sounds pretty fantastical and eerily like a couple of Dean Koontz novels I've read, it's certainly a positive thing in theory, especially vis a vis quadriplegics being able to move again. How about let's also imagine a world where someone figures out how to fix the crazy wiring in brains wracked and jumbled by autism? See, in my head I'm now hearing that last sentence being read by Movie Trailer Voiceover Guy. You know the one I mean... "In a world where people turn on their coffeemakers, set their TiVo's, and balance their checkbooks...just by THINKING about it..." Heh.