Thursday, May 26, 2011

In his shoes

Wednesday - Today I’m writing from an especially emotional place.  My heart, which could never be called tough by any stretch of the imagination, is about as tender as it can get as of the writing of this post.  It’s raw and fragile and quivering.

This afternoon, David and I snuck into Stephen’s school (that sounds bad, but we didn’t want him to see us and think it was time to go) and, in the nick of time, got to see Stephen presented with an award for walking over 80 miles during the school year in P.E.  Only five 5th graders earned this award – that our baby is one of them is certainly cause for celebration.  And for heartbreak.  And tears…

102_0840In these shoes, he walked around the track, holding the hands of those entrusted with his care and instruction.  Not always willingly (at first) but with determination, he walked.  He wore holes in his shoes, step after step.  He has trekked through the halls of his school, met with constant smiles and hugs because that is what Stephen brings out in people.  He has skipped, jumped, and laughed in those shoes – surrounded by adults and children alike, all offering unwavering support, kindness, and love. 

 

Stephen getting his PE award
In those battered shoes, he walked to the podium today to get his medal, not understanding the applause, not full of pride for his achievement, but smiling because his beloved Heather was with him, guiding him and loving him as she’s done for three years. 

As David and I watched him, I experienced such a rush of emotions, I could barely stand.  My sweet little man, walking with the people who have cared for him so sweetly…amidst a sea of kids who have grown up with him, and who have shared their lives with him in the best ways they could…  My heart swelled as I watched him walk, fingers in his ears to block out some of the sensory information.  In an instant, I thought of this innocent soul, plodding along in his bulky pull-up, so very different than the kids surrounding him.  I try to focus on the little pleasant things Stephen does, and his smile…but then there are times when the sorrow just washes over me, and I have to just let it flow.  He will never really know what happened on this day, but I will never forget watching him, or the smile on his face as he walked back to his seat.  In his own way, he felt special…and not in a “special needs” kind of way either.

So, in those ragged, worn out shoes, he walks through his life – comprehending very little about the world around him, at times outraged by the sometimes nonsensical nature of his environment, dependent on routine, difficult to deal with…exasperating, funny, exhausting, precious.  In these shoes, he dances and hops and twirls – laughing that belly laugh that warms my heart…

Thursday - Most posts I knock out in an hour or so, but this one is carrying over into the next day.  Today is Stephen’s last day at his school, and I’m just as teary and emotional as I was yesterday – or more so.  At this school he has been so happy, and so loved.  He won’t be going on to the school where his brother will be in 8th grade in the fall – they don’t have an autism unit and so Stephen is going to another middle school…new kids, new faces, new routines for all of us. 

102_0844Right now, as I look at the clock, he has about another hour at his beloved school…and he doesn’t know today is the last day he’ll be there.  He walked in this morning as joyfully as he has nearly every morning for 3 years…here you see him going across the crosswalk.  And that gentleman you see is Mr. Hughes…but Stephen calls him “Stop Sign.”  He’s nothing if not practical.

In my heart, I know that Stephen will probably do just fine at his new school, and that everyone will fall in love with him, just as they did at his old school.

And they have loved him.  So many precious people who have gone above and beyond what was required, and I am grateful beyond words for the way they walked beside my baby – literally and figuratively.

102_0848102_0849

Stephen and “Ponder,” and with his sweet teacher for all three years, Miss Heather.

Stephen’s steps may never take him far from home.  He’ll always need someone walking beside him, watching over him as he follows the path available to him.  He is surrounded by people who love him.  We grit our teeth and get through the hard times (when going through hell, you know, you keep going) and we surrender to the abandon of laughter without reason.  As old-fashioned and clichéd as it sounds, sometimes when Stephen’s really pushing the limits of my patience, it really does help to think of how it must be to walk in his shoes…

And then my heart grows calm, and my love for him grows larger, and we keep walking.

Tuesday, May 17, 2011

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.

Wednesday, May 11, 2011

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: story

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.

Saturday, May 7, 2011

A failure to communicate

I’m not sure I’ve ever written mid-chaos, but if I don’t get these words out right now, I’m going to break something, or smash something.

Stephen won’t stop asking for “something to EAT,” and I am finishing the journey toward madness trying to convince him that “something to EAT” isn’t a place or a special kind of food.

I have pleaded and cajoled.  I brought him Burger King for lunch – “Look – something to eat from Burger King!”  Then we went a few more rounds, and I took him to the grocery store, the whole time saying, “All these things are foods we eat.”

He doesn’t get it.  The simple, basic concept of what this phrase means escapes him, and he cries and hits and looks bewildered, and I am going nuts here.

Just now?  I grabbed his hand, took him into the kitchen, and threw the door of the freezer open.  I pulled out garlic bread: “This is to EAT.”  Tater tots: “To EAT.”  Hot dogs: “To EAT.”  I spun over to the pantry, yanked the door open.  Went through the same routine with foods in there.  When I paused to take a breath…”something to EAT?”  I hit a shelf so hard I broke the skin on my arm.  The frustration has reached epic proportions and I am clueless.  Powerless.

Damn it all to hell.

Those steps aren’t looking all that helpful now, are they?  I’m powerless.  And where’s my Higher Power?  Not stepping in to help me? 

I just don’t see how to keep going.  I marched him down the hall, shut the door to his room, and left.  I couldn’t take it anymore.  He’ll come out, and I bet I know what he says next.

Thursday, May 5, 2011

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.


Monday, May 2, 2011

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.)