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.

A Growing Season

This morning I sat curled up in a corner of the couch, sipping coffee, writing in my journal, thinking over the past few days, and realized I was mentally chastising myself for not posting an entry on the 15th.

So I missed posting a birthday blog for Stephen.  This year we actually celebrated Kerry's 17th birthday (which was on the 11th) on the 15th, while Stephen was enjoying a visit with Mamaw and Papa.  It just worked out that way, especially since we stopped having a specific party or celebration for Stephen. It continues to be a relief and a mercy for all involved that we made that decision.  No cake, no presents, no hubbub that bewilders a boy who doesn't understand.  It's absolutely the right thing to do.  Or not do.

So, as I tried to let up on the self-criticism, I realized that certainly I could post on the 18th.  I'm way too picky and hard on myself about things that I shouldn't be...

And I want to be more conscious of writing about the good things that happen on the mountaintops of our lives, not just slogging tearfully through those dark valleys.  So, in honor of Stephen's 15th birthday I want to share some things about a day we spent together.

A little background: Stephen has (unlike many severely autistic kids) been to the dentist quite a few times over his young life.  The very early visits, when he wouldn't sit in the dentist's chair or really open his mouth, when young dental students crawled around on the floor trying to get a glimpse ("Umm...I don't SEE anything of concern...") were challenging and ultimately didn't really accomplish too much.  We moved on to visits at different offices that were all about the struggle to get him to take Versed (once or twice even having it put down his throat via his nose) and onto the papoose board made for a child half his size so he could get a rudimentary cleaning, or else I practically laid on him while his teeth were cleaned as well as possible.  Exhausting but definitely more purposeful.

But then we found a dentist who truly understood our struggles and our desire to take care of Stephen's teeth, whose patience (and that of his staff) is endless and abundant.  

He suggested at our last (papoosed) visit that we schedule a sedation visit to Children's Hospital, during which Stephen could comfortably rest while a really thorough cleaning was done, x-rays could be made (a first) and possibly have sealants put on his molars as a preventative measure.  After much planning and paperwork and a quick check up with our pediatrician, we arrived at the hospital last Friday (the 13th...) and were quickly put into a room.  Stephen was calm and happy and began asking for Chick-Fil-A 23 seconds after we got into the room.

Typically I would do my best to leave him dressed, just as you see here, to avoid upsetting him.  But...he has been doing better lately with change.  I'm practically crossing my fingers as I type that for fear of jinxing it.  But the fact remains that he IS handling certain things more calmly: being told "no" to things he picks up at the store, etc.  So, I decided to be brave and, after he got settled with his iPad, I told him we were going to put on some other clothes to see the doctor.

And he let me...

He also let me wrap a blanket around him because the room was cold.

He took his Versed by mouth without fighting.

He let multiple people come in to the room without telling them to "go 'way."

He let multiple people put strange paper things around his arm, and he DID NOT FIGHT.  Or scream.  Or hit himself.  Or even cry.  The wearing of these bracelets is unprecedented.

He giggled.  He gave me kisses.  I crawled up on the bed and rubbed his back and hummed songs and smelled of his hair and gave him a million high-fives for being such a sweet boy.

And then they came to roll him down to the OR.  I walked beside him all the way, and he clung to my hand.  He was groggy, yes, but he wasn't sure about this...and then they took him through the doors to the OR and I watched him as long as the doors took to close.

I went back to his room and waited, trying to develop my powers of telepathy or teleportation, wondering if he struggled with the mask as they put him to sleep, or if he cried or said Mama.  It was a long hour, watching various kids and parents come and go on the one-day surgery floor. Finally, the dentist came and talked to me, and everything went perfectly: no struggling, no fighting, no crying...no need for sealants after going 15 years with minimal oral hygiene and NO cavities, they got x-rays and did a really good cleaning...the dentist was amazed at the lack of plaque and build-up.  It's all that water he drinks, in my opinion.

And then, I heard a bed being pushed up to the room where I sat, and I saw one sock foot hanging off the end of the bed, and it was a foot I recognized.  He was back, sleeping peacefully and well.  

After the nurses parked his bed and left, I spent at least another hour with my chin propped on the side rail, just looking at him - this boy who should be pestering us to get his permit, following his big brother around, maybe playing football and discovering girls but is instead trapped in the world of autism...and I felt peace. Again, to revisit something David reminded me of that I mentioned in my last blog: sometimes, it's just the way things are.  Fighting against what IS brings suffering.  Yes, there is pain.  There is sorrow and sadness and disappointment.  But there is undeniable joy in this child's existence and we treasure that.  

I am so proud of how he handled the sights, smells, strangeness, and discomfort of this day. He was victorious, and THAT is worth celebrating.

This last photo is my favorite. It somehow encapsulates the emotion I feel when I look at Stephen, and realize what an accomplishment it was for him to not only make it through a difficult day but to smile and laugh at the same time.  My heart is broken and then mended by these soft, small hands.  He endured discomfort and change with a grace that is beyond his ability to understand.  He is and will always be my baby.

The way of things

This morning, like a thousand mornings before, I put my arms around a 200-pound boy's shoulders, as he started to lift himself up off his bed to get cleaned up, changed, dressed, and ready for another day.

As I helped him sit up, his chubby cheek pressed against mine, and for the briefest moment I could've sworn I was feeling the perfect, satiny cheek of a newborn baby...the faintest scent of the vanilla lavender lotion I still put on him after his bath wafted up, and in that moment I loved him more than any mother ever loved her son.

A few nights ago I walked into the warm kitchen, darkness peering in through the windows but making no dent on the coziness inside.  Stephen sat at his spot at the table, playing with the miracle otherwise known as "features iPad."  His head, sporting a fresh crew cut, was uplifted and tilted slightly to the left - it's his dreamy, faraway, enchanted look.  He gets that look when he's focusing on listening rather than looking, and those of us who live with him know that look well.  In an instant, I took all this in - just after his bath, sitting there dreaming, slightly swaying to the music from the iPad, his t-shirt neckline shifted a bit and one pudgy shoulder peeking out - and in that moment I felt fiercely protective of him, of his innocence and purity of spirit.  Had some villain burst in, intent on doing Stephen harm, I would no doubt have fought him bare-handed and won, so intense was this protective instinct bubbling up from my heart.

In the last few weeks, Stephen has had some of his absolutely priceless and joyous non-stop giggling fits...especially if his dad or I figure out something he's saying and are able to repeat it back to him, or if he watches a certain Thomas video clip over and over and finds it especially funny...and in those moments, his delight and happiness are engaging, hilarious, precious and fun.  He laughs that belly laugh, barely able to speak, and one finds it hard not to join in, and just love him to pieces.

And then.

The other day, David and I came home after a long day.  Stephen had had a FANTASTIC day at school (ZERO SIB's) and he had laughed and giggled with his Mamaw all afternoon.  Not five minutes after my mother left, the TRANSITION problems set it, and we had a meltdown. Not a thirty minute horror, but still, even thirty seconds is bad enough...  And he ended up in his room after slamming the door, screams and slaps plainly heard regardless.  I dragged myself into the kitchen, all the lightness gone from my spirit, and I complained to David, "WHY does he do this after being great ALL DAY?  Why do I always get the bad stuff?"  (which is not even true, everybody's had their share, and could I get some cheese with that whine?)  

David looked at me and said, "...Because that's just the way it is sometimes."

And so it goes.  It IS just the way it is sometimes.  Sometimes it's just plain awful. Sometimes I want to apparate the heck right outta there.

But then I would miss those baby cheeks, those soft little hands that pat my face, that little voice that tries so hard, that whispers "I love you!" to me, to his daddy, his brother, to restaurants he loves as he's leaving :)...his new habit of announcing things as they happen, and praising things for doing a good job: "Yoook [look]!  here comes grilled cheese!" and "Well done, socks!  Well done, shoes!"...the sweetness of him sleeping, looking more like five than nearly-fifteen...the laughter, the eyes that crinkle at the corners like his mama's...and the honor to be found in protecting him and loving him as best we can, for the rest of his life.

Sometimes, that's just the way it is.