Wednesday, April 1, 2015

April

*Update 4/2/15 at bottom*

Everyone is lighting it up blue and being aware of autism, so it must be April.

Disclaimer: the following is not uplifting.  It is not inspirational.  It is not full of grace or wisdom or patience learned over years of hardship.  It contains no acceptance.  No calm resignation of what is.

I think everyone is AWARE of autism by now, right?  I mean, sure, half the people I meet still think "Rainman" when I say autism, but surely very few people are unaware.

Here are facts of which I am aware, today, April 1, 2015:

  • I hate autism.  Oh my god, how I hate it.  
    • I am sick of living with the obsessive obsessive OBSESSIVE words and videos and sayings and phrases.  I'm sick of puffing out my cheeks and making certain faces a hundred times a day and it's still never enough.  
    • I'm sick of Blue's Clues.  Dora.  Bob.  THOMAS THE TANK ENGINE.  I am sick of it all.
    • I'm sick of changing diapers.  This is my fifteenth year of doing so, multiples times per day, every single day and I am TIRED of it.  I'm tired of carpet that smells like pee (or worse) if you sniff it too closely no matter how many times I've scrubbed it.
    • I'm sick of medicines that seem to work...or do they?
    • I'm sick of not being able to TALK to my son and ASK HIM WHAT IS WRONG when he's screaming.
    • THE SCREAMING.  The self-injurious behaviors.  The martial arts helmet we had to buy to protect him FROM HIMSELF.  
    • The unpredictability.  I come home from work and my clothes go here.  NO, they need to be hung up.  No, they need to be right HERE.  
  • I'm tired of people offering "suggestions" and implying I don't try hard enough if I don't follow them.
    • I always appreciate kindness, but the endless loop of "you and your husband must be very special, for God to have given you such a special child" is wearing paper thin.  We do not feel SPECIAL.  We feel cursed.  Let the parents of high functioning kids who are quirky and have narrow interests claim that God-given specialness.  Because let me tell you that there isn't anything special about a child imprisoned inside a malfunctioning brain, whose needs and care must always take the forefront, whose family suffers and is isolated and alone.
    • "Have you thought of potty training him?"  SERIOUSLY?  I can't even go on here, but other parents of similar kids will get my incredulity.
    • "Maybe it's time to find a group home for him..."  Again...no comprehension of what's involved in signing your helpless child's life away, trusting a non-verbal and beautiful child's safety and well-being to total strangers - NOT TO MENTION that it's not quite as simple as picking up the phone: "Oh, hello, loving and amazing autism caregivers!  I believe we are ready to check Stephen in to his lovely room where he'll be engaged, safe, and happy!  See you on Tuesday!"  Please.  GIVE ME A BREAK.
  • Finally, on this, the first day of "autism awareness month," I am aware of the following:
    • No matter how hard it is, no matter how piercing the screams, how repetitive the quotes from Thomas become, no matter how particularly we must select certain items and place certain items and eat certain items from certain bowls...I know in my soul of souls that Stephen is the innocent.  He was born the way he is, it just took a while for it to emerge, and I have no idea how life looks through his eyes.  I don't know what his favorite color is.  I don't know what he dreams.  I don't know how songs sound to him - if it sounds "off" or if his speech is just too affected to pronounce certain words.  I can't imagine what pain he feels when he screams, when tears course down his cheeks - especially when it happens out of the blue, like last week when I took him to IHOP.  And he had a meltdown, full-fledged...screams that would pierce your eardrums, in a packed-out restaurant full of post-churchgoers.  And they stared.  And the entire restaurant went silent.  I couldn't help my child.  I couldn't leave because that would make it worse.  I sat holding Stephen's hand and crying uncontrollably.  My thoughts went somewhere along the lines of: "Oh dear god, whyyyyyy?  Why here?  What is WRONG?  WHYYYYYYYYYY?"
    • All that said, there is no blame to be placed on my man child's admittedly broad shoulders.  David, Kerry, my mother, Stephen's teachers and aides, and I all do our best, every day, to care for him lovingly.  I think most days we succeed, after any storms have passed and the screams are replaced by ecstatic giggles (as if a switch was flipped).  Then the exhaustion sets in.  Mental, emotional, physical.  All of me, every part of my awareness, cries quiet, hot tears as I huddle in the dark bathroom, face buried in a towel and really just letting it go.  I'm sure every one of us who care for Stephen have our moments of breakdown and dread.  
    • People tell me that they admire us. They don't know how we do what we do.  That's the thing...we DON'T do very well in some ways.  We love each other, and we support Kerry's amazing musicianship but overall we are stuck in rigid patterns, afraid to venture out into our own neighborhood because what if Stephen...  Afraid to invite people over because what if Stephen...  Unable to take a quick drive to the store without sneaking and planning because...Stephen.
    • Yet...there is a joy beyond comprehension when he's happy. It's otherworldly in its intensity at times, and while we obviously welcome smiles and cackling laughter after a bout of screaming, it's still...odd.  Cute, but odd.  The way he plays is the way a toddler plays.  No video games.  No bugging his big brother for rides.  Nothing is like I dreamed.  He'll never go on a date, or talk to a girl, or live independently.  EVER.
I truly don't know what the future holds.  There are waiting lists for adult care and services (such as they are).  If I was a millionaire, I could plan out his life and make sure he would always be okay.  But I'm not.  And I can't.  I fill out forms and do interviews and look and look and look for answers.  I try to solve insurmountable problems.  I try to work and keep life going at home, when most of the time I don't have more than a few minutes to myself, or time to spend with the husband who shares my life and the care of both of our sons.

I'll close with what I found myself sobbing into the hem of the bathrobe that hangs on a hook in my bathroom.  What began as incoherent blathering, tears dripping onto my knees as I sat there, shifted into equally incoherent phrases and whispered pleas (to whom?)...but the last thing my subconscious shouted in a loud whisper was, "I just want a little normal*.  And I'll never, ever have it."

Update, 4/2/15:

*I misused the word "normal" here.  While posting in a highly charged emotional state is a great way to get gut feelings out there, it's not exactly the ideal conditions for clear and accurate writing.  Therefore, I wanted to amend my post.  What I want, what any of us wants, is peace, warmth, love of family and friends, and to live life fully and well.  Today, after a night of sleep, and waking up a happy boy who also slept well, I can say unequivocally that I do, in fact, have many of those things, more often that I realize.  What I really should've said is that I just want a little...cure for autism.  I want a little life without autism.  And, while I doubt I'll ever, ever have it, I still have much to be grateful for.  I've learned a lot about myself and what it takes to try to live and "joyfully participate in the sorrows of the world," my thanks to David and Joseph Campbell for this concept.