The reluctant traveler

It's 12:45 a.m. I'm sitting in the cramped, stuffy "spare" room at my parents' house, typing on my dad's antiquated PC. Stephen is asleep on his air mattress in their living room. I can't sleep. David will read this, note the time, and tell me: "I can't believe you didn't fall asleep!"

Stephen and I drove here at 11:30, after he became more and more restless and wired and refused to go to sleep at home. He had his meds as usual. Eventually I even gave him an extra 1/2 dose, which I'm allowed to do when he's extra stubborn (and it's been months since I had to do that). He wouldn't lie down. He kept wanting lights off, then on. He began acting like it was morning and he'd just woken up. Unbelievable.

I have no idea what happened. I am at a total loss, and that is my least favorite state of being.

He got sleepy on the ride here, but woke up as soon as I had to get him out of the car. He launched right back into his whiny, agitated state. My mom and I sat in the den and looked at the walls. At one point she said she could tell that I was not doing very well. I agreed. Finally I told her to go to bed. I closed off part of the house so at least Stephen wouldn't disturb my parents. I lay down with him and tried to hug him tight to see if that would help. It didn't.

So, I left the room, called home to let David know we were okay (well, safe anyway) and just waited. After about 5 minutes, I heard nothing, and peeked to see that he had finally collapsed.

This kind of thing used to happen all the time. Thankfully this is an isolated incident. It better be. I just can't go here, like this - not anymore.

The worst part of this whole evening is that Stephen had been fine earlier. I was feeling calm(ish) and looking forward to a good night's sleep. This came out of nowhere. What if it happens again? I know I shouldn't think that way, but I do.

The other disturbing thing is that I sit here dry-eyed. I can't even lessen the pain I feel by crying. Or sleeping.

Life is good?

I’m beginning today with a comment I only recently received on the last post I wrote, which was back in June:

“…I check your blog often and see you that you have been quiet for a while. While some of the other blogs seem to be more popular and trite at times, yours rings of honesty. ~Leigh.” 

There are two remarkable things going on here.  First, someone checks my blog often?  I’m honored yet ashamed that I’ve been silent for months.  Secondly, that phrase “yours rings of honesty” means SO MUCH to me.  Because if nothing else, I’ve tried my best to be honest – sometimes brutally so – and sometimes I’ve felt that was off-putting, that nobody wants to read about how awful I’m feeling.

And after the weekend we just had, I’m feeling awful.

This morning on the way to work, I saw a Jeep with a “Life is good” wheel cover on the back…and just to the left was a puzzle-ribbon “Autism Awareness” magnet.  These two items in juxtaposition?  Does not compute. 

Obviously, some people are happy.  Life seems to be generally good for 99% of the people I come in contact with, whose cheerful posts I see on Facebook, who seem to float through life with relative ease.  (No, I’m not saying those people don’t have problems.  No, I’m not claiming that my life is the worst possible life.  Of course things could be worse, blah blah blah.)  But I do not see how anyone with any firsthand “Autism Awareness” could also feel that “Life is good.”  I just don’t.

This weekend was bad.  Part of the problem stems from the fact that Stephen has developed a habit of having us do Google searches on his iPad for videos or DVDs that he wants.  He had asked for a certain Blue’s Clues one so repeatedly a few weeks ago that I finally broke down and ordered it, we printed out a picture of the cover and put it on his calendar for the following weekend (I fervently prayed to the gods of Amazon.com to PLEASE make sure it got delivered by that Saturday).  Great, right?  He was happy when the day came and he got “Get to Know Joe.”  Only, in his brain, where precious few things connect and make sense, Stephen quickly realized that if we looked up things, he asked and asked and asked, then Mama sits at the laptop, something magical happens and DVDs show up in cardboard boxes.  (I won’t even mention what happens when Stephen finds an older image of a VHS tape that he has, but of course his cover looks different.  He doesn’t understand that it’s the same content.) 

And so this past weekend, we received a Bob the Builder DVD he had wanted…he was happy enough when I ordered it a week before, but midweek he found a Thomas one he wanted.  Since we already had something on the calendar for Saturday, I kept saying, “Next time,” or “Next week.”  He doesn’t understand that.  He just starts saying, “Next time, please.”  When that starts and I realize anew the limitations of his understanding, I want to pull my hair out by the roots.

Let me insert here that of COURSE we don’t have the money to keep a constant stream of DVDs coming in.  Luckily they’re fairly inexpensive…I told Kerry once that when I buy a DVD, what I’m really trying to do is purchase is a few minutes of sanity.  That’s Stephenomics, and it applies to the financial sector as well as other goods and services.  Buy a bag of Cheetos when I know we have one at home?  Sure.  $2.99 will buy me 3 minutes of peace at the grocery store.  Spend 10 minutes putting wooden trains into the roundhouse when I really want to watch TV?  That’ll buy me 5 minutes of calming down to get Stephen into bed.

And really – before I overdo it on the details of all these transactions – the crux of it all is Stephen’s inability to understand the most basic things, and the pain he feels and CAUSES when all isn’t going to suit him.  It’s so far beyond him being “spoiled,” too – it’s his bizarre reliance on patterns and his insistence on sameness.  If I see this picture, I want that thing, and I can’t stop thinking about it until I see some sort of evidence that shows me I will get that thing in the near future.

If I had hours and hours to spend with him, maybe I could last through the tantrums and after many, many, many hours of repetition, train him away from this type of thinking.  But I don’t have that time, and so I keep going, trying to work with his “logic” within reason, and trying to outlast the upset if I can’t make things work otherwise.  For example, the pool we belong to closed after Labor Day, and there’s nothing we can do but say “We’re all done swim,” when he asks.  And that first weekend?  BAD.  Crying and crying and crying and squealing.  Awful.  It’s slowly gotten better, but he’ll continue to ask well into wintertime.  Another one: he has been on school trips to the local bowling alley.  It’s called “Oak Mountain Lanes.”  He can recognize words quite well, so if we pass a sign – ANY sign – that contains the word “mountain,” or especially “Oak Mountain” (and there’s a lot of stuff around here named that – we have a state park, schools, businesses) – he points frantically.  “Ohhh Mountain please.”  If I say "Oh, we’ll go sometime…”  “Sometime please.”  And I would take him, too – but then he’d want to go all the time.  And we can’t.  So we don’t go at all, lest we start up another pattern.  He can’t understand things well enough to, say, “earn” a trip to bowling.  So that won’t work.

When you live in a household that quite often hums with the chaos that autism causes, the last thing you want on a “peaceful” Sunday morning is for some unforeseen something to happen that will start up the squealing.  But of course that’s what happened yesterday.  First the internet froze up.  I fixed it but it was too late.  Then he tried to watch one of his old DVDs with a million scratches.  The main content works fine (miraculously) but oh, that would be too simple!  No, Stephen wants to watch the “sneak peeks” on one of the obscure menus – and he wants to watch it at 32x speed.  And because that section of the disc looks like a cat used it for a scratching post, the damned thing just won’t PLAY at 32x speed.  So the squeals started.  And he gets louder and louder, gritting his teeth and clenching his hands.  Knowing that David and Kerry were still asleep, my gut locked up.  It felt like I’d swallowed a 20 pound weight.  The pressure built in my head, my heart raced.  “Shhhhh!  Stephen, PLEASE!”  I pressed on his head, his shoulders, trying to find something to calm him.  (Actually “squeal” sounds way too cute for the noise he produces.  Maybe screech?  Scream?  Something of a mix of those two is about right.  It gathers your nerves into a tangle that takes a long time to untwist.)

Nothing worked.  By this time, everyone was up.  We all walked around in silence, almost avoiding each others’ eyes.  Why do we do that?  Is it just too painful to see the anger, the hurt, the confusion in the other person?  You feel angry – who is there to be angry with?  Stephen?  Sure, sometimes, I get mad at him.  Completely and unreasonably angry, then I feel like the worst person on the planet.  Sometimes I just snap at the others around me, knowing that I’m being ridiculous and petty.  And I do it anyway.

And so, what?  What is the answer?  There isn’t one, and it is the most awful feeling.  I’ve been told to accept that someday he just won’t be able to live with us.  And then the next day I’ll read about the abuse of mentally handicapped people.  And my stomach turns.  How can I trust this innocent soul will be cared for?  He has no voice and could never, ever tell if someone hurt him.  So there’s that.  There’s the guilt I carry around for what Kerry deals with, things his friends never have to worry about.  Does he feel pushed aside?  Angry? 

There’s David, and our marriage.  The stress is unbelievable.  By the time Stephen finally succumbed to sleep last night, I felt (and looked, I’m sure) like the walking dead.  I could barely string three words into a sentence.  I had done laundry and cleaned the kitchen and defrosted the deep freezer and mended some of Kerry’s clothes and tried to study for the GMAT like an automaton – why?  Why not sit and relax?  Do some of those calming activities I read about?  Because that gives me too much time to mull over the unsolvable problems.  As long as I keep busy, I can concentrate on problems that I CAN solve.  Dirty laundry gets clean, dry, folded, put away.  Chipping away the permafrost in the freezer is rewarding.  That ice saw the fury of my putty knife, and I chopped at it for all I was worth.  I need problems that can be solved.  I have too many – too many really BIG problems – that have no solutions.

It’s really ugly inside my head right now.  Seeing happy people, or reading about pleasant things that other families do together, or wondering for the gazillionth time what it must be like to just live casually, taking your kids to see their siblings play ball instead of having to scope out sitters a month ahead of time…all those things literally bring tears to my eyes.  Why?  Why can I not accept that this is it, that it’s not fair and them’s the breaks?  The sorrow lingers and twists and burrows into everything.  Nothing is safe.  When Stephen is quiet, my body still reacts to every sound.  I can’t sleep anymore – I wake constantly from dreams I can’t remember, but that bring me to wakefulness with a start, hearing sounds that aren’t there. 

I know I’m going to upset some people with what I’m going to say next.  I may alienate a few of my small number of readers, but I just can’t hold it in.  I cannot accept it when people start telling me how “special” we must be, how there’s a “special place in heaven for mothers like you,” or, the worst…  “God has his timing and things are going to work!  He’s there for you!”  I’m sorry.  I just can’t hear that any more.  Life for my baby boy, who didn’t ask for any of this hell, for me, for my family…it can be awful.  It is often hellish and miserable. It has been this way, at varying degrees of intensity, for ten years.  It promises to continue in a similar fashion.  And I just can’t stand to hear that stuff any more.  I need help NOW.  I’ve needed help for years, and it rarely comes.  People offer help, then forget as they go about their lives.  It’s expensive to have a kid like Stephen – diapers alone are outrageous.  My 76 year old mother is our only real backup.  What happens when she’s no longer able to help?  These and other questions make it nearly impossible for me to believe that God – whoever or whatever that means – is just hanging out up there, waiting for…what?  For me to ask?  I’ve begged, pleaded, prayed…  For me to “give up control”?  I never had it to begin with.  For us to learn some vital lesson? 

So there it is, unvarnished.  Ringing of honesty?  Too loudly, perhaps.  But as before, it was get it out or risk exploding. 

What really matters

I’m having that “you haven’t posted in eons and you expect people to take you seriously as a writer?” feeling.

In some ways, the fact that I haven’t been driven to post should tell you one of two things:

1. Things are going so smoothly that I just haven’t had the urge to vent before my brain explodes, or;
2. Things are so bad that my brain DID explode, and I’m now coming to you live from the laughing academy.

I’m happy to inform you that “1” is more in line with the truth than “2,” but it IS only early June.  Check back with me mid-July.

Thanks to the fact that Stephen’s teacher Heather is helping us by keeping Stephen a few mornings a week, Stephen has been fairly happy and even-keeled since school ended in late May.  He loves Heather and wears a permanent grin when he realizes he’s headed to her house in the mornings.  Afternoons have been manageable….props to the good folks at Apple and their iPad, and to the magical, wonderful, wacky world of YouTube, where people upload Thomas videos, looped versions of the 20th Century Fox fanfare, and various other kid videos backwards.  Forgive me, but it’s an autistic kid’s paradise.

We’ve had some moments, though. 

Like the afternoon Stephen got hold of the index card box where I store all of our laminated pictures for his schedule…see, I stick my head in the sand way too often, and it hadn’t sunk in that my baby was plenty tall enough to reach the top shelf in the cabinet.  So, before I got home from work, he got the box, scanned through it, and found the picture I’d made for “birthday.”  He got David by the hand, and trotted to his weekly schedule, whereupon he decided that Saturday was the perfect day for “open.”  So, when I got home, I decided to sneakily (I thought) take that picture off – because it’s not like you can just wrap presents and open them on a whim – and hope that we could plan something else that would be fun.

Right.

He was so unhappy.  It is a classic autism conundrum and one we have yet to solve.  See, we counted it a triumph when we began to be able to plan for a week in advance, putting a picture of McDonald’s on Friday, and Stephen being okay with that, even on Monday.  He counts through the days, each day getting one step closer to the desired place or event.  Sometimes we’ve put “mall,” or “bookstore,” or “doughnuts,” or whatever, and he can see that something fun is on the way.  So in his mind, anything in that box was fair game, and damn it, he wanted to “OPEN” on Saturday.  To have that velcro-ed picture ripped away must have been excruciating for him and his logic.  Well, long story short, we got through it, after a long time of crying and asking and asking and crying. (And yes, I did get some sense and have now stored the off-limits photos, like birthdays and Christmas and so forth in a separate location.)

Then there was this past Saturday. 

David had figured out through a complicated series of events that Stephen wanted to “open” (buy) a DVD of “The Wizard of Oz.”  That, we could do.  We printed out a small picture of the DVD cover, and we put THAT on Saturday.  So we had our day planned, and things were okay.  To make it even more special, Kerry decided to go along with me and Stephen to run our errands.  (The fact that I promised Kerry a CD he has long been asking for had nothing to do with his choice to accompany us, I’m quite sure.)  Things went along fairly well till we got to the grocery store.  Saturday was a bit windy and rainy in our area, and as we were making our way up to the checkout, the lights in Publix went out.

My heart just sped up, remembering.

So, as the emergency lights came on, dimly lighting the store, we continued, but Stephen was in meltdown mode.  This was DIFFERENT and therefore not good.  As we got to the register he continued to cry.  I looked at Kerry’s face and he was stoic but glancing around to see who was watching.  He finally convinced me to let him take Stephen out to the car.  I said, “But I don’t want you to have to sit out there with him crying.”  His reply? “That’s better than him crying in here, mom.”  So, they went.  I waited till the lady in front of me redeemed her 47 coupons, each of which had to be entered by hand because the scan-thingy wasn’t working.  I finally made it to the car, loaded up, and we headed for our last stop, Burger King.

Stephen had calmed down when he realized we were on the way.  I was still a bit shaky, and Kerry patted my shoulder.  “You okay?”  He is a teenager, through and through, but inside him beats a very compassionate heart.  I was just getting to the point of relief as we pulled up to the ordering speaker. 

“I’m sorry.  We’re closed.”

No….

“Why?”

“The power’s been out.  We’ll be serving again in 30 minutes.”

Well, it might as well be three MILLION.  (extra points if you can place that quote)

So, we drove away from Burger King.  I flew like the proverbial bat to the interstate, flew down the road, all the while tossing words over my shoulder: “We’re still going to Burger King!  We’re going to another Burger King!  That one was…broken!”  Kerry kept trying to calm him too.  We finally made it to another store, somehow got the food (I had to repeat the order three times because Stephen was screaming so loud) and started home.  And somehow, suddenly, he was fine.  It was over.

Throughout the evening, Kerry came to me a few more times, just to see if I was okay.  I kept looking at him – this tall (taller than me) handsome young man with the deep blue eyes and the ready smile, this boy becoming a man before my eyes, who exasperates me when he seems to forget everything but his own name, who plays too much Xbox for my liking…I looked at him and knew, as I’ve known since he was just a little guy, that he is something special.  His heart is sensitive and open, and I believe he will do great things. 

I wish we could be like other families.  I wish we had yearly vacations, instead of NEVER having vacations.  I wish Kerry could talk about his favorite rides at Disney or Universal, or his favorite thing to do at the beach…I wish we could be spontaneous and spur of the moment, and that his little brother was like other little brothers.  I wish all of these things…but I can’t make them come true.  I have to believe, in spite of all that, that our family is going to make it.  Kerry is learning, among other things I hope, that when you love someone, you take care of them in the way they need caring…that when life gets hard, you push through…that listening to everyone talk about Disney or skiing or whatever, while painful, doesn’t mean that you’ll never get to have fun and go on trips…and have a happy life.

Because in the midst of my step-taking (and yes, I’m on steps 6/7 and we’ll go into that another time) and my fretting about all the things I’m so good at fretting about and my daily search for satisfaction in a job that offers very little…like all mothers all over the planet, I want my children to have happy lives.  I don’t accomplish everything I want to during the course of a day and I make countless mistakes.  Some days I get way too caught up in what we don’t have, or what we can’t do, or how hard things can be.  But, when I go into a coma fall asleep at night, there’s peace in my heart because if nothing else, I know I’m trying instead of giving up, to help the boys get there, each of them in his own way.

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…

In 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. 

Right 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.

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.

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.

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.