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.



The Times Between

The little village looked as if it had grown up naturally, part of the surrounding forest.  The villagers loved their home, and nurtured it carefully and tenderly, aware of the treasure they possessed.  Babies were born, laughter rang through the quiet village streets, little events brought changes...and life moved on.  The children grew and changed.  The sun shone, rain fell, winds blew, heralding the arrival of each new season.

Then one dark, chilly morning, the villagers sensed an ominous presence in the air.  A great heavy mass of black clouds hung low, bizarre lightning flickered, and the winds howled.  Unfamiliar with anything but the gentle rains that came and brought life, the villagers huddled together, frightened.  They ran for shelter, terrifed beyond anything they had ever experienced.  The storm ripped and tore, moments felt like hours...every window shattered, every tree bent and bruised, torrents of angry water flowed through the streets.

Just as quickly as it had come, the storm dissipated.  Ribbons of blue sky appeared, mocking the darkness that had covered the sky so completely moments before.  The sun emerged, washed clean, and shone insolently over the wreckage of the village.

Dazed, the villagers began to appear, many shaking their heads in confusion.  Children raised their hands to the sunlight, recovering their smiles and giggles quickly - rebounding absurdly fast as children do.  Adults were slower to appreciate the warmth that belied the devastation that lay in front of them.

A meeting of the elders that night brought about plans to prepare for another storm such as the one that took the village so completely by surprise.  One man was appointed to watch the skies from a nearby hill, charged with alerting the village should those black clouds ever appear again on the horizon.  A group of women were put in charge of gathering up children and animals if the alarm sounded.  Every person was given a job, and each was determined to do that job, and protect themselves from future dangers.

In time, the alarm bell sounded.  Panic set in, but this time the village was prepared.  Shutters clamped shut, everyone found a safe place...the winds howled, the very foundations shook.  Trees were uprooted, stones hurled through the air as if thrown by a malevolent giant.  The village withstood the blows, but still some were injured.  Bodies were bruised and broken.  Homes destroyed. 

All the preparation...the plans, the safeguards... Nothing could stop the storms.  The damage was swift and sure.  The adults shook their heads in sorrow.  Their world was forever changed.  Even when the sun came out, as the sun always does, the elders eyed it distrustfully.  When the children danced and laughed in the golden rays slanting through the forest trees, their mothers worried just a little more than they did before.  What if the sky lowered blackly and the winds began to scream again?

Even when the sun hung brightly in an impossibly blue sky, the signs of the storms were ever present.  Foundations were weakened.  Trees lay dead on the forest floor.  Instead of windows letting in the light, there were heavy shutters, keeping the houses dark. 

In the Between Times - and there were many - the villagers tried their best to enjoy the peace and harmony.  But the memories of the Storms were intensely real and never quite left their consciousness.  And life, though pleasant at times, was never the same again.

Watch this space...

After a lengthy absence, I have plans in the works for updating my blog.  In part, I will be adding a section that highlights autism "tools" that I've found or created to help Stephen with certain situations over the years.

I'm still trying to cook good food, at least insofar as my budget allows, so there will probably be some foodie stuff sprinkled around too...

I'm posting this simply to try to spur myself on - both my husband and my very dear friend M have encouraged me to share some of my "inspirations" for trying to help my baby boy navigate a world that must so often seem foreign to him.  So, I will.  Maybe something I've done will help someone else who's struggling.

So...in short...stay tuned!

Mirage

After an especially trying weekend, I sought what I refer to in my head as my “haven” –  propping myself up against pillows on my bed, in the bedroom farthest from the TV, the living room, the kitchen, and the noise Stephen generates constantly.  But, he found me, flopping onto the bed cross-wise, one babyish hand finding my foot and patting it in that instinctively sweet way of his.

He’s stretched out, jabbering away, his t-shirt too short (as most of them are now), and I can see the jagged pink stretch marks on his belly…ugly reminders of his poor diet, his huge pharmaceutically-induced appetite, his inability to understand limits.  Autism, the wild beast that invaded our lives a decade ago, persists in trying to tear us apart, and it has left its mark on my son’s skin as it tries to claw its way out.  This evil, wrong presence – a million miles away from the happy, feel-good kind of autism that has parents lauding their child’s “differences” and appreciating their “uniqueness” – has terrorized my family, and there’s no weapon that can be used to defend us.

We have bound ourselves together to fight it, but inch by inch it creeps in.  We are trapped, isolated, a bizarre island in a sea of unhappiness, and it hurts.  It’s lonely.  It’s impossible to understand unless you live a similar life, and there just aren’t many people who do. 

At this very moment, as I type, Stephen is back on the bed, his round, soft cheek resting against my arm.  He giggles.  “Band-itch,” he says.  I am silent, thinking.  “Band-itch, peeze.”  I have no idea what he’s saying.  My heart breaks for a child who can walk and eat and sleep, and in most other ways is unable to conduct his life as a human being…trying to talk, staring earnestly into his mother’s eyes as he sweetly says, again, “Band-itch, peeze.”  As I shrug and say, “Baby, I don’t know…” he once again gives up, not able to communicate, and so he retreats back into his mind, jabbering about Thomas or Percy or whatever.  I got lucky this time.  So many times this kind of non-communication results in screaming fits.  What a wilderness of confusion his brain must be.  It shatters me to imagine his bewilderment with the world.  I’ve been a soggy, crying mess over the last 12 hours.  Two more tears trace paths down my face, and Stephen reaches out a finger to catch a drop off my chin, and he wonderingly looks at it, then wipes his hand on his shirt.

The future scares me.  Stephen’s puberty looms like another monster, an unknown enemy lying in wait.  Our older son starts high school in a week – how is he doing, really?  He told his dad last night that “this stuff” does get to him, but he doesn’t show it.  He just goes downstairs and pounds on his drums.  Have I failed him?  Is he destined to run far from this home that I’ve tried in vain to make tolerable or even happy at times, taking memories of chaos and noise and pain?  It is more than I can bear.

For years, I have worn a silver band engraved with “HOPE” on my right hand.  I bought it at the first autism conference David and I attended.  Those snake oil salesmen/vendors are nothing if not purveyors of hope, mainly of the false variety.  Regardless, I have always gained a miniscule particle of strength when I’d glance at the ring on my finger.

Today I took that ring off.  Right now it hurts more than it helps, because hope seems elusive, mocking me as it swoops in only to disappear when I reach for it.  Oh, there are times when my eternal, cockeyed optimistic soul believes that happiness is possible: the scent of newly mown grass that transports me to childhood, Stephen’s wild dancing and laughing moments, Kerry’s enthusiasm over music, David’s constant ability to make me laugh till I cry, a perfect sentence in a book I love…

But my well of hope has run dry, for now.  I’ll find a way to replenish it, but right now it’s empty.  I’m afraid, I’m discouraged, I’m out of ideas.

Years ago Kerry gave me a necklace that has a charm on it: “#1 Mom.”  He honored me by considering me a great mom, but I have a hard time convincing myself of it during dark periods, like now.  Today I put my hope ring on that chain, and hung them both back on a hook.  In sight, not packed away, but not to be worn…not while the beast snarls at the door.  I’ll keep what’s precious out of harm’s way, with the vestiges of stubborn endurance I have left.  We may be hanging on by a thread, but in my heart I believe the thread is made of something just strong enough to withstand the attack.

For Sissie

My sweet, loving, laughing aunt Joyce (“Sissie” to me and to many) died quite unexpectedly last night after a brief illness.  I was there, in the room, with a host of family members.  It was a heartrending yet precious thing to be there as Sissie quietly left this life.

I will miss her every day.

Even though I didn’t get to see her as often as I’d have liked, I did talk to her frequently, just to say hi.  She was always my consultant when I had a sticky cooking issue or question.  I’d call her up, tell her what was going on, and she always knew what to do, how to fix it.

She has been a constant fixture throughout my life.  She worked at the same university my mom did, so childhood summer days spent “working” with my mom always involved a trek across campus to visit Sissie.  I always felt so independent on those walks, and so comfortable visiting her office.  Sissie worked in the housing office of the university – she was famous amongst a certain group of “problem children” who were never happy with their dorm room assignments.  She ruled with an iron fist, and rightly so!  When David and I first began dating, he went with me to a cousin’s wedding.  It was his first time to meet many of my extended family.  He saw Sissie from a distance, stopped short and said…”Wait…she is your AUNT????”  Turns out he had met Sissie already, albeit in a very different context.  That always made Sissie smile when she would remember it in later years.  She knew David on sight, and immediately remembered who he had roomed with, in what dorm, and what trouble he and his roommates were. 

Above all, Sissie loved her family.  Her son, her daughter, her grandchildren, and great-grandchildren, her brothers and sisters, and all of us nieces and nephews. She loved unpretentiously and fully.  She adored my sons, always remembered their birthdays…Kerry and Stephen’s school pictures had a place of honor on her shelf, right alongside the photos of her grandkids and great-grandkids. 

She was generous with her resources in every possibly way. 

Sissie was the quintessential wonderful Southern cook.  Her turkey and dressing would’ve won any contest, and she made pans of it every Thanksgiving to share with anyone who just couldn’t get the knack she had of making that delicious dish (ahem).  Another specialty of hers was tiny, bite-sized lemon tarts – creamy filling inside homemade pastry tarts.  These always showed up at Christmas, and I have very fond memories of the HUNDREDS of tarts Sissie made for my wedding reception years ago.  I can picture her now in her kitchen: barefoot, hair a bit disheveled from the steaming pots on the stove, singing to herself…

Women across the centuries have been the lifeblood of the home, the caretaker, the nurse, the comforter, the provider of meals.  Today, and every day that I endeavor to become a more loving mother, daughter, cousin…every day that I look for the fun in life, that I try to laugh a little more…with every meal that I put together in my kitchen…I honor a most precious Southern lady who succeeded in these ways and countless others..

Mama and Dooley and all of your family miss you.  I love you always, Sis.