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.

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...

Accepting uncertainty

Many times over the last year I’ve decided that my blogging days are over.  In typical fashion, though, I have a hard time admitting that I can’t or won’t do something.

I spent a half hour recently going back to the beginning, to my first entries in 2007 and following.  What struck me most intensely was the anguish I so often poured out, the trials and tribulations, the discouragement and frustration…and, even though the last six months have been without a doubt the most challenging of Stephen’s life, seeing those old entries so full of pain reminded me that we’ve been through many valleys already.

One entry from the past was titled something like “The 4’11” Tyrant.”  Yet, the way Stephen acts now, in the grip of puberty and hormones and god knows what else, I feel ridiculous for referring to him as a tyrant all those years ago.  Talk about a perspective shift…  Of course, he’s no longer 4’11”.  He’s very nearly my height, 5’7”, and his weight has steadily climbed upward, thanks to the side effects of Risperdal.  We continue to rely on that drug to keep him calm – at least most of the time – and while we try our best to keep his servings small, he is a carb-fiend and good luck to anyone who thinks they can improve his diet.  We’ve tried.  He was stubborn and set in his ways years ago.  Now multiply it times 100 and you’re getting close to what we deal with now.

The sudden onset of fierce OCD right around his 13th birthday has shaken our already fragile world to the foundation.  We have been to 4 doctors, at last count, and are on our second try with meds to treat OCD.  Of course, the meds must be started slowly, be allowed to build up, slowly increased to “therapeutic” levels, and THEN, you hope they work.  If not, then you have to slowly decrease, try the next suggested medicine, and start all over again.  Meanwhile the tantrums continue.  The head-hitting continues.  Not every day, no.  Less frequently than February/March?  Maybe.  But the idea of them, the possibility of these horrible fits, lurks under the surface constantly.

We are practically levitating, we are so carefully walking on eggshells.  Sneaking in and out of the house whenever possible, to avoid the separation anxiety.  Sneaking Kerry downstairs to drum when Stephen isn’t looking, closing Kerry’s bedroom door and pretending he’s in there – even though the drums are clearly heard – somehow keeps Stephen from screaming and demanding “IS KERRY????!!!!????” and hitting himself.

And underneath and beside and entangled with it all are my inborn neuroses.  I was raised by a nervous mother and I learned my lessons well.  Even when there is peace, my heart races, trying to prepare for the next bout.  I worry all the time.  ALL. THE. TIME.  I worry about things that may not happen.  BUT WHAT IF THEY DO?  Surely my fixation on future possibilities will ease the shock when/if they happen!  It’s just smart planning to ruin your life and the lives of those around you with permanent nervousness and tension.

Lately I’ve been facing the reality of what I’m doing to myself and to my family with this…STUFF.  It is incredibly hard for me to even begin to contemplate letting go of my worry/anxiety combo.  I have such a twisted and bizarre sense of loyalty to it.  Somehow for years I’ve justified maintaining this mentality – pointing to the admittedly few times things have really gone badly as proof that I was right to worry all along.  Over the last few months I’ve started to see clearly how wrong that viewpoint is, and what a waste of precious resources it is to try to exist like this.

Yesterday, I was fretting and stewing about how best to get Kerry out of the house for his first marching band practice, doing my best to foresee every possible issue or problem, how I would handle it, what I would do if the first thing I tried didn’t work, carrying that thought all the way through to the conclusion I typically jump to in my mind, which is:

If he won’t calm down, I give him med A.  Failing that, med B.  Failing THAT, call the doctor.  If that doesn’t work, I have to take him to the hospital.  Oh god, how would I ever leave my helpless man-child in the care of strangers?  What if they won’t let him keep his iPad?  How many diapers do I take? Would they restrain him?  What about work tomorrow?  What if THEY can’t help him at the hospital????

As humiliating as it is to admit, THIS is the madness that shoots through my brain like an electric current in the space of mere seconds.  This lunacy saps my energy, takes away my appetite, shuts down my common sense, and robs me of the moments of happiness that still exist…not to mention the very obvious effects on those around me. 

It has to stop. 

Life is hard enough, taken at face value, without the addition of these mental meanderings…honestly, as I read it again it might well be something someone would babble in a fever delirium.

People like me think that worry is helpful.  That anxiety serves a purpose, that we can somehow foresee the future and prepare…it’s all nonsense.  While a certain amount of awareness of outcomes is smart and practical, it’s a far cry from the storm in my head. 

I’ve been this way as long as I can remember, and somehow have muddled through up to this point.  Maybe it’s my age, maybe it’s the sharp increase in the difficulties we are experiencing, maybe the clear impact it’s having on me, my health, my family - who knows why I’m forced to face the absolute futility in continuing this way of “life” now, but it’s happening.  I am using mental images of the color red, of stop signs, etc. to try to halt my damaging thoughts, to try to throw off the worries when they come creeping, or sometimes RACING in.  I’m working hard to stay in the moment, to be mindful of THIS moment…and this one, and the next, letting things unfold as gently as possible.  To allow myself to be aware of the future only in a general sense but refusing (often over and over and over) to start sending tendrils of thought snaking their way into the uncertain future.  Part of my task is to radically accept uncertainty – because the alternative is simply impossible.

I’ve always worried about the uncertainty of what is to come, always allowing my thoughts to slide into negativity, sure if I expected the worst then I’d be prepared, or at the least I’d be happy if A BAD, HORRIBLE, DEVASTATING THING didn’t happen.  Now, I must accept the pure, unvarnished nature of life’s uncertainties, and try to believe two things: 1) Things just might be okay in the future and 2) If they’re not, I’m not alone, and, along with the people I love, I will survive.

Growing pains

Since my last entry, we have been through hell.

Two months ago Stephen turned thirteen.  In the ensuing days it has become clear to all concerned that Stephen has begun going through puberty, and this “rite of passage” is a nightmare for our family.  The “temper tantrums” I mentioned two months ago have escalated into brutal meltdowns – crying, screaming, stomping, pulling hair…and most heartbreaking of all, hitting his own head with his hands until he cries in pain.  Unless you’ve been through this, or seen something similar, you may not understand.  I can’t find the words to express how devastating it is to know that your child in such emotional pain that he is compelled to cause himself physical pain.

It is awful and horrible and it shatters our heart and souls…on those evenings when the meltdowns go full bore, the walls begin to close in, the very air is hard to breathe, and peace and hope and joy seem impossible.  As I wrote in my journal recently: “Happiness is for other people; not for us.”  Twice I have nearly wrestled Stephen into the car, thinking wildly that I would drive him to a hospital and storm into the ER: “TAKE THIS CHILD AND FOR GOD’S SAKE SOMEONE DO SOMETHING.”  David’s calming hand on my shoulder has stopped me, and he has been able to get Stephen settled, and life goes on, after a fashion.  We walk on eggshells.  We consider EVERYTHING before we do it.  Will this bother him?  Are we ready to deal with that or this or the other thing?  It's no way to live.

I have continued my decade-long quest to find help – and we are finally meeting with some success: call backs, appointments set, in-home services coming soon – and I am thankful, of course.  In the end, though, there’s always the underlying pain, the knowledge that in some ways he’s never going to get better, he’ll always be a big, overgrown toddler..

Stephen also has developed severe OCD symptoms.  Every little change bothers him.  EVERY LITTLE CHANGE. 

My idea of what goes on in Stephen's poor head:

Daddy takes his glasses off to clean them but no NO NO. Daddy WEARS his glasses and I must stand here and fret and possibly cry until he puts them back on. 

Daddy is outside cutting grass?  I can SEE him but he is not HERE where I can keep track of him so NO NO NOOOOOO.  I will stand at the window and ask 'Is Daddy?' every ten seconds.

The paper towel is hanging down off the roll.  That is not how it goes.  I will stand across the room and point and grunt and squeal at Mama until she rolls it back up.

My pants are wet but they are the pants I have had on all day and I do not want to change.  Wet is bad but change is worse. Mama's pictures about dirty wet clothes make sense but change is BAD and I cannot change.  It hurts my head.  I will hit my head because the world hurts me and my body feels different and I don't like it.

Mama walked downstairs.  IS SHE GONE? I know 'be right back' but I don't like 'be right back.' I like everybody where they belong. 

And I could give a hundred more examples.  We've always known autism was bad.  We've always had struggles.  But nothing could have prepared us for this.

We have an appointment with a new doctor in a week.  We hope to talk about changes/additions in meds and possibly get Stephen some help as we live through this harrowing time.  In my head, I think of it as "The Dark Time."  The darkest yet.

Love you forever

Any mom reading this is familiar with the children's book Love You Forever.  The premise is a bit on the ludicrous side if you look at it from a certain perspective - how weird would be it be to climb up a ladder to your grown son's room after he's asleep so you can pick him up and rock him "back and forth, back and forth"?

However, as I look at my life at the present time, I'm starting to see that the story, in fact, may be pretty close to what the future holds for me and my "baby."

Today Stephen is thirteen years old.  He is only a couple of inches shorter than me, and outweighs me considerably.  And he still sits in my lap, and we rock back and forth.  As long as I'm living...my baby he'll be.  Literally.

My thirteen year old son still isn't potty-trained.  He gets tummy aches and cries like a colicky newborn.  He throws temper tantrums like a toddler.  His face is still babyish, his hands small and soft.

This picture was taken about a month ago.  He cuddled up to me and I was struck by how young he still looked.



Even though today is his birthday, we're not having a party, or even doing anything different.  This is the first year we've done this, but after thinking about it a lot, this is the best way.  We just got over Christmas and its barrage of sensory input and presents out of nowhere.  Stephen still gets a weekly "surprise" from the mailbox, so really, we celebrate 52 weeks a year.  He doesn't eat cake, and having parties just stresses everyone out.   So, we'll defy convention, and even though David and I whispered, "Happy Birthday" to our son, that will be the extent of the celebration this year.

I love you forever, my little man-child.  I will hold you and rock you back and forth, back and forth, as long as my arms have strength.