Autism Awareness?

I wasn't sure I'd ever write here again.  I'm still not sure.  I'm typing hesitantly, feeling it out.  

But here goes: the other morning on my commute to work, I looked at the four cars immediately surrounding me as we zipped along the interstate, and each of the four had an "AUTISM AWARENESS" sticker or magnet or car tag.  And I thought to myself how UNaware so many people are about what's really true about autism.

So, I find myself wanting to talk about some things.  They are not happy things, or lovely stories, or charming anecdotes.  Not this time.  These are ugly and sad and unpleasant things.  If you are easily offended by profanity or have a weak stomach, then please stop reading now.  I'm not a "curser" by nature, unless the situation warrants it...

The 12 year battle against autism rages on.  RAGE being the optimal word.  Stephen had a fairly decent summer at a new school.  Certainly his behavior was much, much improved compared to last summer's hell.  There have been transition issues, of course, and having our school system change from a county system (with county-wide supports for special needs) to a city system that was rushed into existence with many "bugs" to work out (and I'm being very kind in this description) hasn't been an ideal situation for Stephen.  I can only hope things will keep improving.

As a family we are in a perpetual state of uneasy alert, afraid of tripping the hair-trigger of Stephen's fragile equanimity.  We still sneak and devise ways to avoid awakening the obsessive-compulsive beast.  It works, sometimes.  When it doesn't, it is a nightmare of screaming, hitting, and mental torture.  Watching this baby-faced boy in obvious torment tears at your soul, at the fabric of your spirit, and those wounds fester and resist healing.  It sucks and makes you want to run into the night until your legs won't carry you any further.  We followed our doctor's advice to try to increase medicine dosages to a "therapeutic" level to treat OCD.  The increase caused him to be erratic and the SIB increased.  So back down we go...

With puberty comes some other challenges.  Diapering challenges.  No, he's still not potty trained.  Not even close.  Doesn't seem to have a clue.  So, we spend thousands every year on supplies.  His bed sheets are stained though they are washed and washed and rinsed and rinsed.  His carpet has stains.  It is HARD to clean him up now that things have changed in his pubic area.  It SUCKS.

Because I have grown so very weary of all the AWARENESS that is being spread about autism, cancer, whatever...because I'm tired of people not getting how horrible this damned disorder is...because THIS is the reality for families like mine, I just have to tell you how it really is.

This is not pleasant.  I have not spared the gritty language.

A few mornings ago, I went in to get Stephen up for the day.  I'm used to stripping his bed.  I've got it down to a science.  Three waterproof pads to protect the clean layers underneath.  Switch out bedspreads.  Spot clean carpet, use Bissell spot-lifter occasionally.  Spray Febreze if needed...  But on this particular morning, Stephen had diarrhea.  My giant baby boy stood in the middle of his room, covered in his own shit, and I watched helplessly as it POURED out of his shorts, down his legs, and puddled - yes, PUDDLED - on the carpet.  (I've since started putting waterproof mats on the floor beside his bed at night).  After years of cleaning up messes, I gagged as I tried to figure out where to even start.

My child, his mind stolen, his awareness minimal, his behaviors so often uncontrollable, stood there, covered in this mess...smiling at me.  Looking at me trustingly.  My mind RAGED.  I'm so fucking angry that THIS is his life.  It's my life.  It's David's and Kerry's lives.  And it is just so incredibly hard and sad and messy and IMPOSSIBLE.

Stephen also overflows his pull-up when he pees - not every time, but almost every day.  I can be standing at the stove cooking and suddenly he's beside me, jabbering away as he does.  Then..."Sqqqqqueeeakkkkk," his foot slips across the floor, which has suddenly become Lake Pee-pee.  Gallons of liquid spreading across the floor.  So then you have to strip him, grab towels (kept handy these days) and clean the floor and him.  Sigh.  More laundry.

To the people blithely spreading AWARENESS; to the people sporting those dandy puzzle piece magnets on their cars; to the parents of kids with HFA or Aspergers: I know unequivocally that you have your own set of challenges.  I've said it before - I understand you don't necessarily want your child cured and that you're very happy "spreading" awareness and so forth.  But please do not lump my kid in with your wholehearted acceptance of the quirks and irritations that you deal with...  I wish Stephen would get better.  He's NOT better, he hasn't improved in over a decade in many ways...not really.  He is a helpless toddler in the body of a man.

Right now, today, things are back to a bit of an even keel.  The last few days, the med level seems to have stabilized at it's "old" point and we have our laughing, silly, hugging-and-kissing man-child back.  But the possibility of the middle of the night upset stomachs, the unavoidable changes that will result in hitting, the frustration of being in a world he can't possibly really comprehend - those things lurk under the surface.  Always.  It takes the rest of our family propping each other up to feel just sort of okay.  Having David and Kerry helps - we all share the trauma, but we do laugh a lot too.  Have to.  This life is not what anyone wanted and we would all trade it in if we could.  But we can't.  

Please, though, the next time some perfectly coiffed "news" anchor blathers on about a kid with autism going to college or nailing the Star-Spangled Banner at a hockey game, remember: they can CALL that autism, but THIS is what autism is really like.

Regrets

It's been so long.  Too long?

I routinely get emails telling me that there's a new blog comment waiting to be moderated.  Invariably these are spam comments hawking designer purses or something.  I always check, though, just in case.  And this past Saturday, there was a real comment from a reader named Karen, who remembered Stephen's birthday.  Her comment read:

"Happy 14th Birthday, Stephen!

I remembered this post from last year and have missed your posts as of late. Thank you for all that you have shared over the years ... it really helps us moms out here going through similar circumstances.

I hope all is well in your world :)"

Karen, if you're reading this, please know that I am so touched that you remembered Stephen's birthday, and that you posted this comment.

I didn't put up a blog post on Stephen's birthday this year.  In fact, other than the "draft" post I've been tinkering with since early December, I haven't posted since July 2013.  And I regret that. 

I mentioned this to David and he said, "Well, maybe you don't have anything to say," and at first I was inclined to agree.  But that's not totally true.  The problem is, I have the SAME things to say, over and over, and I feel like people get sick of reading as I pour out my sorrow and woes and so forth...  And I get tired of having those thoughts.  And I feel guilty for having them, and guilty that I'm not somehow making more of my life than I am.

Mostly I'm just tired.

We didn't celebrate Stephen's 14th birthday.  It passed like any other Saturday, and that's for the best - no sensory overstimulation, no confusion over gifts that appear for seemingly no reason, no party.  Stephen is much the same, just taller and bigger...still a baby or toddler in almost every way - same RAGING separation anxiety, still riddled with OCD and all that entails.

I recently ordered a laptop for myself and hope to get back to writing in some fashion, whether it's on here or elsewhere.  I do appreciate the people who have read this blog and reached out - it truly has meant so much to me.

And maybe I'll post again soon...