And This I Promise…

 

The first alarm went off at midnight, a shrill continuous thrusting of sharp metal through our eardrums.  Then we heard what I knew was coming, my autistic son’s screams.

He wasn’t hurt, just filled with terror, the kind that erases all rational thought.  His mind was on fire,  not our house.  He screamed my name when he saw his father’s image in his bedroom, “No!!  I need Mom!!”

He calls my name when he’s afraid, as though I am omnipotent, the panacea for any ailment, any assault.  He has not yet learned that my skill set is limited.

 

~~~

A few months ago my nine year old son began having nightmares and developed a fear of fire alarms and thunder, of the electricity being cut off during a bad storm.  He hates shrill sounds and the absence of light.  These feelings are mostly universal, but the intensity of his emotional reaction is not.  His autism exacerbates these reactions, blows them far out of proportion.  He becomes paranoid, so much so that no matter where we go, he’s watching the skies and assessing the risks, scoping out the ceilings and tops of walls, looking for the nearest fire alarms, looking for fire pulls.  If he can’t find them he asks me to help.  I assure him that no storms are coming, that any rain will be gentle, that the fire alarms won’t go off.  Unless, of course, there’s a fire.  But there will be no fire, until there is one, but…  Don’t worry, my love, Mommy’s here.

For now.

When these fears began I decided to purchase a small crucifix for him, a crude rendering made of natural stone.  I placed it in a wooden treasure chest along with a small keychain flashlight.  I told him the stone cross would keep the nightmares away, and that if the electricity were to go out, there was a source of physical light in the treasure box.

I gave these crucifixes and treasure boxes to several boys who have autism.  They all attend a sacrament preparation class I co-teach at our Catholic church (a position taken to protect and keep an eye on my son).  All of the boys had tearfully described bloodcurdling nightmares and it broke my heart.  They think literally, so I knew a physical talisman would help, despite my lack of belief in the supernatural, no matter what form it takes.

It was no surprise when the boys’ mothers reported later that the nightmares had stopped.

I’d known the crucifixes would be effective, not because of their shape or intended meaning, but because of the power ascribed to them.  My daughter had a similar protection item to sleep with when she was younger, a purple “dragon tooth.”  We’d purchased the three-pronged “tooth” from the Texas Renaissance Festival in 2008, an item we had to take with us on every trip away from home lest she refuse to close her eyes at bedtime.

I glued the Dragon Tooth back together many times once her little brother was old enough to discover and break it.  At some point a tip of one of the prongs on the tooth was forever lost, which didn’t render it any less potent.  The magic remained intact, and even now that my daughter is nearing her eleventh birthday and no longer needs the magic (or has assigned it elsewhere), she still keeps the Dragon Tooth for sentimental reasons.  It sits on her dresser beside a stack of dragon fantasy books, near her favorite jewelry, a few inches from a mirror she pays much more attention to these days.

Last night the alarm went off multiple times as my husband struggled to identify which battery was defunct.  There were several, it turns out, so I let my nine year old sleep in our bed, his cheeks still wet with tears.  He remained close to me all night, a part of him always touching a part of me — a foot on a foot, his hand resting on my arm or gently holding my hand.  He needed to feel safe and secure, to attach to a more powerful source that would drive down the volume of his terror.

This morning we’re all tired from last night’s drama, from being awakened at midnight and again at 3 am.  My neck is stiff from remaining in the same position all night, stuck at the edge of the bed, stationary so as not to disturb the fragile tranquility of the sleeping child beside me.

The 9V batteries in every fire alarm will be replaced today.  They won’t last forever, of course.  One day this or next year, per much experience, one or more batteries will fail.  At that time my son’s terror will likely return.  There will be storms in the interim, our home rattled with intense thunder, the inevitable wrath inherent in nature squashing our minuscule ration of power.

There will be darkness, which I cannot control.

All I can promise is my best effort, that I will be here to protect him as much as I can for as long as possible.  But my son knows deep in his bones that one day my energy will fail.  I will lose power and my physical light will burn out.  Until then I must teach him that his treasure is an abiding trust, an unyielding faith in something greater, an ideal held in our figurative hearts, or perhaps genuinely ascribe to something physical we can touch and hold, no matter its shape.

The goal is to feel safe, to be seen and loved by a warmth we can we can touch in our most vulnerable moments.  It is a universal prayer that crosses all divides, this reach for tranquility, for enduring light, no matter how ephemeral the source.

 

 

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Abandoned Places

 

 

I’ve always had a thing for brokenness.  I’m drawn to broken people, broken minds, broken spirits and places.  I love the Japanese aesthetic, Wabi Sabi, which is a way of seeing beauty in brokenness.  Nothing is perfect, nothing lasts, nothing is finished.

This is probably why I’m so drawn to abandoned places.  I have a board on Pinterest for abandoned places — mansions, mental institutions, amusement parks, nuclear plants, farmhouses.  Every place has an essence, whether still occupied or not.  But there’s something about an empty place, a place stopped in time, humans taken out of the equation.  The stillness of inanimate objects and invasion of dirt, leaves and even trees, creates an echo of the past, and creates the same melancholy in me as a long baleful train whistle.

Time has stopped in these places.  Memories have stopped.  Life is stopped.

I can’t help but try to imagine the lives once there.  I’ll mentally pick up the trash, clean and straighten the curtains, fluff pillows, vacuum.  I add people, television sounds or music.  I add stories, drama, love.  But I can never get it right.  What came before is always a mystery.  Where souls go when they abandon the body is even more of a mystery.

In most dream interpretation books, houses represent spirituality, like the home of the psyche.  Multi-storied houses are vast and perhaps more accommodating for old souls or healthy souls, etc.  There is meaning in hidden rooms, behind locked doors, down below in the dark of the basement.

When I look at abandoned places, it’s like looking at death.  Life is gone, and now there’s just stuff, soulless matter.  If the house were a repository for the soul, now the soul is gone, and the house is empty.  Like the body when we die.  The body is just stuff.  I want to donate my stuff when I die.  Why leave it to waste?

Anyway, here comes a segue…  Since I live in Autism World, I see a lot of disabled people, every kind of disability.  I see broken minds all the time, broken bodies, broken lives.  Some can not contemplate their own lives.  Which makes me wonder about the mind, the soul, the part of us that is believed by some to live on after we die.  Some believe that this part that lives on will inhabit a  new and improved body and brain.  Will my son be whole in heaven, if there is such a place?  Will he no longer struggle?  Will there be a forever home for his beautiful spirit?

Such a scenario would bring me great comfort, but I have my doubts.

If things are above as they are below, then who’s to say we don’t have abandoned houses in heaven?  Even stars die, and the rate of star birth is slowing.  The universe is full of black holes, black throats swallowing anything nearby, an emptiness so deep as to have tremendous mass and gravitational pull.  Not even light can escape.

Julian is starting to worry about dying, about me dying.  He says he wants to be with me forever.  The first time I tried to comfort him with talk of heaven, of us being there together one day, he thought for a moment then asked, “Will we play Angry Birds?”

In other words, will we have corporeal lives?  Things around us to knock on, taste, wrap our arms around?  I think not.  But I won’t be telling my son this.  He needs reassurance, to be certain there’s a place for us, a forever home.

A place is never just a place to me.  The older, the better.  I feel the richness of history in the oldest places.  I’ve been known to sniff the walls.  I reach as far as my mind can to sense the lives that came before, to honor them.  Sans memories, we can only honor lost strangers.

I did this once in an abandoned hospital.  The x-ray department was the only part of the building left open, and I was the sole employee.  Since I was rarely busy with patients, I often took walks around the building.  The eeriest place was the surgical ward.  There were overturned tables and gurneys, a few tourniquets and empty glass canisters.  The walls were turquoise ceramic tile, still shiny.  The large domes of overhead lights were darkened, covered in dust.  Straggly wires protruded from broken intercom systems.

I stood for a long while in one particular suite, imagined all the life-saving surgeries that had taken place there.  I also imagined how many lives were lost, then wondered if it was truly possible for souls to literally float away from their bodies to occupy a corner near the ceiling, to watch human hands working frantically to save them.

In that moment I longed to gather all the lost souls, to give them a proper send off, say a few words in the room where they separated from their bodies or went out like a light.  I wanted to tell them someone was thinking about them, whomever and wherever they were.  The room was so empty, so empty that emptiness felt like a something, its own entity.  That entity felt ancient, like an unanswered ache from the bottom of the bottom, the lowliest place a human can fall.

Maybe all I was feeling was me feeling sorry for the dead, feeling sorry for my dead, feeling sorry for myself and everyone else that has to die one day.  I have the same haunted feeling when I look at pictures of abandoned places, when I watch a funeral procession or walk through a cemetery.  When I listen carefully to a ticking clock.

No one, no thing, escapes death.

We’re told over and over again that the stuff of life doesn’t matter.  We’re told that our bodies will die, that we can’t take the stuff with us, that only the soul matters — the soul and love.  Which may be why that’s all I can think of when I look at an empty place, where neither exists.  I pine for the knowledge of what came before.  Were there children?  A father?  What was the last meal prepared in the empty pot on the stove?  Where did the sounds go?  The laughter in the amusement park.  The screams in the asylum.  The conversations about nothing, whispers in the dark, secrets and ‘I love you’s’.  The steady hum of unanswered prayers.

The blemished walls will never tell me.

Dear Daddy

I worked with another Teresa once, a woman about fifteen years my senior.  We called her Terri to keep us separate.

Terri was plump and casual, methodical, patient.  Her nickname among family members was Muffin.  She had a slight drawl and a healing touch.  She touched a lot, hugged a lot.  The magic in her touch was like the soothing quality of a mother’s hands.  She was very popular with the hospital patients we worked with because of her nurturing ways.  She was popular with anyone who needed mothering, whether they expressed this or not.

When she touched my shoulder or forearm while telling stories about her childhood or some great lost love, her touch reined me in, induced a warm relaxed calm.  She was like a soft place to curl up, to retreat.

But there was one thing I could never get past.  Even at the age of 56, Terri still called her father “Daddy.”

It wasn’t just her.  I’ve heard many women, usually older women, refer to their fathers as “Daddy.”  I bristle when I hear it.  It sounds like a desperation to be little again, helpless and coddled.  It sounds way too infantile to be coming from the mouths of older women, women who have given birth, women who are grandmothers, women who shouldn’t need a daddy anymore.

My husband thinks I’m envious of the close relationships these women have or once had with their fathers.  I’ve considered this carefully, but that’s not it.  My mother and I were extremely close, but I never feel the urge to call her Mommy.  Never.  Ever.

Come to think of it, I never hear older men or women referring to their mothers as “Mommy.”  Never.  And why is this?

My father and I have never been especially close, despite having so much in common.  There’s just always been a gap in our relationship, an inexplicable awkwardness.  We write letters monthly to stay in touch.  This has been our preferred mode of communication for the past twenty years.  We haven’t seen each other since 1998, and I think we would both like to maintain status quo.  It’s just easier on paper.

Maybe I’m missing something.  Missing out.  Maybe I’m callous.  Maybe I don’t find the parent/child relationship all that sacred anymore.  Maybe I never experienced childhood thoroughly, deeply enough.  Maybe I doth protest too much.

I called my mother “Mom” or “Mama” and my father has always been “Dad.”  When my parents divorced I was eight and traumatized by it, by the sudden absence of my mother, so when my father married my stepmother I latched on to her.  She had a daughter a couple of years younger than me.  Michelle called her mother “Mommy” so I did the same.  I was literally invited by my stepmother to call her “Mommy” so it seemed natural, welcome.  But I ended this practice when I turned eleven.  I felt too old to be using such a babyish word.  I wasn’t a baby anymore.

My mother was a career bride, married four more men.  She never kept one long enough for me to give him a title, and I never considered any of the five a stepfather, much less a “Daddy.”  They were just men who wanted to be with my mother.  They and I were background noise to one another.

When I think of “Daddy” I think of other words like it:  puppy, kitty, baby.  I think of other cutesy words like itty-bitty, little, teeny, sweet, small, innocent.

Is that what “Daddy” is?  A longing for innocence?  A longing to be small again?  To have someone take care of us?  To trust them absolutely?

Whatever my reasons for bristling at the word, I’m certain I’ll continue to bristle at “Daddy” and “Mommy” if I ever hear an adult use the word.  I just feel that men and women should reach a point where they’re grown up, where they separate from their childhoods.  As a term of endearment, “Daddy” just seems a step too far, just as a mother calling her adult son “baby” would be a step too far (although never as bad as “Daddy”).

It sounds like regression, like a need to turn back time, to become the children we once were.  So the practice is either immature, or I have unresolved issues.  And if I am merely reacting to having never experienced the kind of idyllic childhood others long to return to, then my bristling anger makes a different kind of sense, as in, If I didn’t get one of those childhoods, then you don’t get to return to yours.  Especially now that you’re too old.  Grow the hell up.

Or something like that.

 

Mama On Fire

Julian wants to “eat the bread” which means, take communion at church.  He no longer attends a Catholic school, so we have to take sacrament preparation classes after school, every Tuesday evening until sometime in May.  Not only does he have to take classes outside of school, but he requires a special needs class structure.

I made a call, found a class at our parish, and absentmindedly volunteered to help out however necessary.  Before I knew it, I was co-teaching the special needs class.  Me.  The “Catholic Agnostic.”

Yeah, it’s a little dishonest to walk a walk yet not support all the talk, dogma and misogyny that go with it.  But after struggling most of my life with faith issues, or more specifically, issues with organized religion, I’ve come to accept that I’m simply an agnostic, or maybe a spiritualist or humanist.  I act like a Christian, but without the advertisement label.  But I do feel like I have to pretend to be one of “them” when we’re mixing, by taking part in the litany of prayers, the genuflecting, and generally believing in things like consubstantiation, virgin births, resurrections.  Oh yeah, and that Adam and Eve didn’t have bellybuttons.

Why do I go to all this trouble?  Because I promised.  Before my husband and I were married, we spilled our guts about who we were, what we believed, etc.  I essentially said that I was spiritual but not associated with any particular denomination.  He was Catholic, all the way.

I agreed that once we were married, he’d lead, and I’d follow.  We’d planned to have children, and we all needed to be on the same page.  So I’ve kept my promise.  We and our two children go to mass every Sunday.  I help with religion homework.  My children know all their prayers.  I teach them Christian values.  I volunteer at the school and church.  I attend home masses, help with fundraising, donate to all causes Catholic.  We look good on paper.

But I’m secretly just going through the motions.  I tend to agree with a bumper sticker I saw recently:  “Science flies us to the moon; religion flies airplanes into buildings.”  It’s true.  Invisible beings can say just about anything desperate people want hear.  And I’ve seen this craziness in motion, within my own family of origin, my husband’s family and others.  My mother saw Jesus at the foot of her bed once.  My sister-in-law punches stuffed toy owls “because they’re evil.”  My older sister went on a healing frenzy once, praying over everyone in her rural hometown, “curing” one by one (per her), yet God seemed unable to cure my sister of her heart ailment, terrible smoking habit, or her sailor’s mouth.

My father-in-law once paid a curandero (Mexican witch doctor) $750 to rid him of the poisons his wife was allegedly putting in his food.  The “cure” required my father-in-law (aka “Beast”) to rub a rooster all over his body, hide the bird in a back bedroom for a week, and feed it anything the wifey cooked up.  “It worked,” he told me later on.  Though these days, he’s not sure why God allows so many visible ghosts and spirits to follow him everywhere he goes, male and female, adults and children alike, in his car, bedroom, living room, bathroom.  They talk to him, float in and out of walls, shape-shift.  He’s sought the help of priests and psychics, but to no avail.  Oy vey…

I could tell stories about this kind of thing all day, the tales of over the top superstition and religiosity.  I’ve studied every religion, attended their respective churches.  It’s all the same, and boils down to the same thing:  Nobody wants to die.  That’s it.  If you can show me a religion that doesn’t promise an afterlife, I’ll rethink my position.  Until then, I’m open to more information, but I’ll put my money on science, philosophy, psychology, neurobiology.  Maybe God speaks in binary code, “God” being an energy with no gender or personality, more of a committee than a lone entity.  It’s certainly complicated, and no tedious pontificating religion can embrace or explain it.

Organized religion scares me, and it should scare you, too.

So tonight I’ll begin  co-teaching four little boys about all things Catholic, so they can participate in the sacraments with other typical children.  This is very important to my autistic eight year old.  He wants this, and by “Godmittee” I’ll do whatever it takes to make this happen, even if it means encountering some supernatural wrath and bursting into flames.

The Dangerous ‘What If’s’…

We’re doing lots of testing this week at Julian’s old school — IQ, life skills, ADHD, etc.  Julian will be 8 in a couple of weeks.  He hasn’t been tested in a while, and never this extensively.  We need a current and comprehensive picture of where he is developmentally.  Or at least I need this picture.

Why?  Because I want to know that I’m doing enough for him.  Is he getting the services he needs?  Therapies?  Does he need more or less medication?  Is the picture better or worse than we thought?

Here’s the biggie:  Are we making progress?

The goal is to help him reach his highest potential.  I want him to have every opportunity.  We can’t miss a beat here, shortchange the kid, disable him further.  What is he capable of?  Maybe the testing will reveal these things, each area of potential a golden hoop we can aim for and score.

It’s been a rough few weeks.  I’ve had to face (not for the first time) some of my greatest fears.  For starters, I always feared having a disabled child, having my life and freedoms sucked away by the extreme needs of another human.  This sounds selfish, because it is.  But it’s also human.  What’s the point of having dreams, freedoms, wishes?  There’s nothing wrong with these things.  And if life throws us a curve ball and we have to forever put the needs — extensive needs — of another ahead of our own, that’s a loss.  Plain and simple.  We can deal with this gracefully, at least on the surface.  We can wear a heroic mask as we seemingly glide through the muck of special needs.  But a part of us will always feel cheated, no matter how much we love our child.

I would kill or die for my son.  But that doesn’t mean I don’t feel cheated sometimes.

My other fear was being an older mom, the disheveled panicky caregiver everyone pities.  You know the one.  She waited too long to have children, or she had a “surprise” child late in life.  The child was born with some sort of disability.  So this mom is dressed comfortably, maybe in “mom jeans” and a t-shirt, some flip-flops.  Her hairstyle is simple or nonexistent, just like her makeup.  She wears little or no jewelry, no nail polish.  She and her life are unadorned, under-appreciated.  She’s too busy to notice.  That’s her saving grace.  Hers is the opposite of an “I want…” life; hers is a “Needs only…” life, special needs, that is.

I’m not in “mom jeans” yet, and I still manage to wear makeup.  But some days I know I look like hell.

I used to wake up at 5am and drink my coffee alone in our quiet living room.  There was only the hypnotic ticking of an antique clock and the warm light of a table lamp to my left.  The light shone on a few photographs, mostly of my cats and children, maybe a vacation photo or two.  One morning about fifteen years ago I stared at these pictures for a long time, especially the one of my now adult son.  He was only 8 at the time the photo was taken, and as I studied his happy smile frozen in time I let a wild fear gnaw at my guts.  I feared that he’d suffer a mental breakdown one day like my mother, or develop schizophrenia like my older brother.  It would be the worst thing, to lose a child to mental illness, to watch him lose his mind, his self.

I brushed away the thought that morning, but it does return on occasion.  My brother’s schizophrenia led to homelessness and an early death.  The disease had been triggered by extreme stressors — my parents’ divorce, my mother’s addictions, my father’s abuse.  To suppress my fears, I told myself that these things wouldn’t happen to my own son.  I would keep his life stable.  We’d bypass that critical adolescent age of 14 or 15 when so many males succumbed to the disease.  He’d be fine.  We’d all be fine.

That son is now 25 and most definitely not schizophrenic.  Why we torture ourselves with these fears I don’t know.  And yet, my fear was somewhat prophetic.  Autism is only a hiccup away from schizophrenia.  It got us.  We didn’t slide beneath its vulnerability radar.  We were hit.  Hard.

I’m now the mom I used to pity.  Just like her, I sometimes beg for compliance.  My face is often haggard.  I drift through many days, scarcely noticing.  I wipe feces off the walls and floor, scrub the shame off my son.  When one or another crisis ends and he smells like Lush soap again, I can momentarily forget what he smelled like an hour before, what the whole house smelled like.  I can forget the smelly laundry, the plastic bags of used Clorox wipes, the nasally hum of the Swiffer mop.  When we’re clean again, the rest of the dirt disappears for a while.

There are three levels of concern.  The first is somewhat subconscious.  It’s the typical worrying about the future, what Julian’s life will look like when he’s an adult, when I can no longer look after him.  We tend to suppress this level.  We’re not there yet.  No need to panic until later.  Do what we can now, see what happens.

The next level is worrying about whether I’m doing enough right now.  It’s a mild intermittent jab of guilt.  It’s actually a good thing, because it keeps us moving and motivated.

The deepest level of concern is one of despair, types A and B.  I don’t reach either type very often, but when the school calls to report a feces or other disciplinary event, I slide into type A.  It happens when Julian has smeared feces at home, when a stranger stares at us or when Julian mentally checks out.  I’m thinking to myself:  He’s almost 8.  Where are we?  Where will we end up?  How much better can we expect things to get?

Type B despair is the worst.  It’s a despair that happens least often, because I can control this one.  It comes from asking a question no special needs mom should ever ask herself:  Who would my child be if he/she were normal?

The unfair question prompts an almost irresistible fantasy, a happy ending blockbuster movie of our lives.  In this magical film, Julian is a typical boy and we’re living typical lives, standing in the checkout line at Academy, having a conversation — a real back and forth conversation, philosophical, deep.  He speaks like other boys his age, has similar interests, lots of friends and a busy schedule full of competitive sports and advanced academics.  He is be capable of anything.  His future is stunningly bright.  His father is so proud of his son, proud in the way parents mean to be, hope or maybe even expect to be.

We all dream big dreams for our children.

Aren’t we proud now?   Of the son we have?  Yes, of course we are.  But we’re proud in a different sense.  We’ve had to lower the bar.  We’re proud that he can read at all.  We’re proud when he doesn’t do something, like have a meltdown or get too excited and nearly choke someone else’s three year old.  We’re proud that he can speak, that he doesn’t have seizures, that he sleeps through the night.  Or is what I’m describing relief?

I guess I’m proud when Julian feels proud.  When he accomplishes something, he glows.  I feel what he feels.  I glow when he glows.  We are symbiotic.  We are one now.

It never gets any easier, dealing with the what if…  It’s just best not to go there.  Take a real picture, look hard at it.  Assess and plan for the future, one day at a time.

A Fat Monster Named Helplessness

Long ago my now seven year old attended a Catholic preschool.  He began at age 18 months, and still couldn’t walk or talk.  A few weeks later he learned to walk, and we relaxed a little.

The next year a new teacher noted that Julian couldn’t sit still, wandered the perimeter of the room, and that he still wasn’t talking.  She suspected autism, I would learn later on, but she never shared this with me.

I had my own inklings that he was more delayed than he should be, so I brought it up with his pediatrician, even asked if my son could possibly be autistic (Jenny McCarthy was making the rounds back then, scaring the hell out of all of us).  His pediatrician said to me, emphatically, “I’ve never thought Julian was autistic.”

Ahhhhh….  Just what I wanted to hear.

The following year, when Julian was three and a half, the school finally shared their concerns with me during a meeting involving not only his teacher but the school director.  I knew something terrible was on its way, even before the words were spoken, “No parent wants to hear that her child isn’t perfect.”

His teacher at the time was the “only one with enough heart to take him.”  Was it that bad?  It was that bad.  The teacher even approached me one morning not long after the big meeting, held both my hands, looked deep into my eyes and said, “I joined a prayer group to help me get through this.  It’s going to be a tough year.”

Without a doubt she was (using a Jesus-loves-me-this-I-know tactic) begging me to withdraw my son.

I immediately pulled him out of the school, got the diagnosis of autism, and enrolled him in a school that really wanted him, The Westview School.  He thrived there for the next three and a half years.

This school year we transitioned him to an inclusion program at the Catholic school just across the street from his old preschool.  My nine year old daughter attends this same school, so the idea was to have our children together, which is as it should be.  Or so I thought.

Not long after the school year began, I watched as the old preschool was demolished, its mottled red bricks crumbling, thick dust and jagged debris littering the ground.  It felt good to watch the past turn to dust.

In its place a large expensive religious education center was scheduled to be built, and progress has been swift.  Already there are heavy steel beams in place, an emerging shape.  Just last week, as I watched men in yellow hardhats adding to the structure, I thought, We’re building over the rubble.  We’re rebuilding.  We’re hauling away the trash, the past.  We’re building up, building higher, building better.  Braver.

A few hours later I received an email from one of my son’s teachers across the street.  Things weren’t going so well.

All I could think was No, not again — the not knowing, the anxious tightrope walk, the dull ache in the pit of my stomach when I kiss my son goodbye in the morning, then all afternoon and as I pick him up from school, when I go to sleep at night (IF I can sleep) and when I wake the next morning.  Please, not again.

It seems that just when we’re flying so happily high, that fat monster of helplessness pulls us back down to his level.  Helplessness is heavy, huge.  He wraps himself around our world and squeezes.  Hard.

He’s like an enormous inflamed cyst, a puss-filled wrap-around mass.  When in his grips, I can’t breathe or move.  I can’t see over his fat massive head and shoulders.

And his skin?  It’s slick and brownish gray, shiny like a slug from the bottom of the blackest sea.

This is who we’re keeping company with these days, the slug of helplessness, a slimy sea monster from the deep depths of despair.  He sleeps with me, sits in the passenger seat of my car, whispers worries in my ear. The septic water in his lungs gurgles when he speaks, the voice of rot.  If I forget he’s there, he squeezes me tighter, a swift painful reminder.

Of course I’m doing all the things we autism moms know to do.  I’m making calls, getting new assessments and advice from my son’s doctors, making appointments, implementing emergency interventions like alcohol (for me, not the kid).  We keep moving, despite the pressure from the monster of not knowing, the monster that says not to move, that it’s no use.  Just give up, I’ve got you, he says.

But I’m moving anyway, helping the situation, I hope, despite the monster.  I’m shooting some blanks, I know, but eventually I’ll put a real bullet in the slug’s slimy skull.  Eventually, this will happen.  I’ll fill holes, find answers, apply a few temporary BandAids and voila!  We’ll send helplessness packing.  For a while at least.

This school may be too big.  Julian’s stress threshold may be too short.  We’re looking, looking, looking.  But what if we don’t find enough?  What if we have to tear down another building, hope, dream?

This happens all the time to parents like us.  I know this.  And it actually helps knowing we’re not alone.  But the pain is still quite the monster.  We’re thrown back to not knowing our son the way we thought we knew him, like just after the original diagnosis.  But he’d been fitting in, right?  He was doing okay.  He could handle this.  They could handle him.  We were on the right path.  This was all true, right?

Maybe.  Maybe everything was okay but now it’s not.  Or maybe it never was okay.  Maybe the kid was just barely coping, hiding his discomfort somehow with what language he had, what coping skills he had, what pride he had and the vague awareness that he was making his parents and new school happy.  But everybody breaks under enough pressure.  Julian held it in for as long as he could and now, he’s in crisis.

We don’t know the things we thought we knew.  And I’m so tired of not knowing, of not being able to just flipping know my child has found a home where we all can feel at home.  A home not so far from home, where his sister is, where our church parish is, where “normal” lives.

We just want to be home.

The big recurring message is the obvious:  Your son has autism.  It’s quite apparent, no matter how often you like to forget it, the worst of it.  And I’m sorry about this.  It is what it is, a fat monster which will never, ever, completely go away.  You can’t always control or predict its behaviors.  You can’t always medicate the beast.  No matter how long the reprieve, it’s never long enough.  You’ll get a call or an email:  The beast is back.

A few weeks from now I’ll have the answers I need, preferably sooner.  I’ll know whether or not my son should be withdrawn from the very large school that had all the right intentions.  I’ll know what our next educational move is.  I’ll hopefully be resting better at night, and my son will be too.

But the fat monster will always be lurking.  He’s always just a phone call or email away.

My phone is ringing….that stupid “waves” ringtone…  It’s the school…  Oh god, it’s the school…. 

“Ms. Cortez?” says the demure voice of Sister Christopher, and I’m right to fear what comes next.

Squeeze…

Black Box/White Box

I think I’ve learned how to overcome the problem of remainders.  When we’re young, a remainder is a number left over in a long division problem.  Later on, it’s a lost sock, remnants of a broken heart or another, more devastating loss.

Life is not tidy.  There aren’t neat answers to everything.  We have to learn to cope with the mess, the lack of organization, with loss and not knowing.

I’ve decided that not knowing is still something.  Not knowing is a thing, a noun.  If it had a shape and color, it would look like an empty black box.

When a plane crashes, they don’t always find the black box.  Without a flight recorder, we’re left to wonder about the facts, the final moments of the unfortunate passengers.  Even with the recorder there are still questions, lives and stories missing.  The absence of full details are a painful hollow, an empty place.

But in our personal lives we don’t have to leave it at that.  Humans can decorate their own empty black boxes, adorn them with stickers, paint, glitter, glue.  With emoticons.  Add celebratory emoticons, sad emoticons, happy or silly emoticons.  Paint the top red, the sides blue, add some purple glitter, rainbow stickers, sequins, seashells.  Decorate the empty space.  Maybe it’s a blessing, after all.

I have many thousands of black boxes that fill a much larger box, also black.  I’ve decorated most boxes with glitter and sequins, others with angry emoticons, tar and feathers, old photographs and pictures of words I’ve forgotten how to pronounce.  It’s hard to embrace empty spaces, unanswerable questions, not knowing.

But I still have the boxes.  Before I consolidated, they cluttered the corners of every room, the attic and basement, front and back yards.  I kept them under my bed, in my closets, the trunk of my car.  They gave me headaches, stole my appetite, set off fire alarms and metal detectors.  They barked at nothing.

When I couldn’t sleep, I stared at them.  Sometimes I’d redecorate, stack them, build forts or use them as furniture.  But no matter how hard I tried, I couldn’t seem to get rid of them.  As long as they remained empty, which was their very  nature, there was no ending, no finish, and nowhere else to put them.  Hauling them far away, throwing them over cliffs, into oceans or fiery volcanos was a joke.  As soon as I’d return home, there they were, exactly as they had been before.

The most intriguing of the boxes is actually white.  It came that way, and I can’t bring myself to add anything else to it.  It’s perfect, just the way it is.

I’m guessing that what would be inside is me, the way I was meant to be, my ideal.  If she were here, the black boxes would never have existed.

That’s how I cope now, by holding on to the white box.  Using hope and magical thinking, I shrank it to fit in my front pocket.  I sleep with it, eat with it, take it everywhere I go.  When I’m afraid, I hold the box next to my heart, imagine climbing inside, becoming whole.

Facebook Bullies

Sometimes it’s just a lack of information that makes us think and say dumb things. Sometimes it’s just pure meanness, or maybe fear.

For a long time I thought all autistic kids were like Joey from across the street.  This was back in 1976.  Joey was my age, about nine.  He was blond with blue eyes, very solemn and prone to meltdowns.  His mother struggled to calm him when a meltdown happened, which became more awkward as he grew taller and stronger.

Joey was a little scary to me, an unpredictable element.  I didn’t know what was “wrong” with him, had never heard of autism, and felt sorry for his mother.  My stepmother provided some of my information, things like, “That poor woman” and “Better her than me.”

Of course I didn’t know much detail about the family, Joey’s parents or little brother.  I only saw them getting in or out of the car, the house, or the boys playing in their driveway.  I never saw the intimate moments, the parents tucking the boys into bed, the boys opening Christmas presents, the hugs, giggles and homework moments.  I knew nothing of the family except maybe a couple of meltdowns and my stepmother’s comments.  Joey equaled negativity and chaos, and I’d been conditioned to feel pity for the family.

Maybe that’s why so many parents at my son’s Catholic school didn’t want “special” kids around when their special education program was announced three years ago.  Some were very vocal about it.  There was even a town meeting to discuss the matter.  For a long time I feared subjecting my little boy to bullying at school, and when I use the word “bullying” I’m talking about the parents.  Kids hear their parents talk.  They know what’s up.  It’s trickle-down bullying, bullying by proxy, generational bullying.  But after three successful years I figured the parents had accepted the program.  So I enrolled my autistic son in the special program this year.

Everything has gone well so far.  My 1st grader seems happy.  But I heard recently that some of the parents were posting negative things on Facebook about the program.  I guess they object to what they perceive to be a social blemish on their College Prep-Education.  I’m trying, but I just can’t wrap my brain around or clearly define these concerns.

There are 725 students at this school.  Only about 6 are officially in the special program which serves disabilities like dyslexia, ADHD and high-functioning autism. So why are Christian parents posting highly visible negativity about 6 children on the worldwide web?  Did they not think the parents of the 6 would find out?  Well, we found out.  And…ouch.

If there had been a Facebook in 1976, would other parents have ridiculed nine year old Joey?  Probably.

I went inside Joey’s house once, and though the reason why escapes me, I remember how it felt:  It was way more “normal” inside than I had expected.  Their sofa looked like ours, Joey’s mom was baking cookies, they had a spunky Yorkie.  Their carpet was actually cleaner than ours, and overall, the house was more peaceful.  Joey was just a kiddo, his family a typical family.

I’d just seen a sliver of reality in Joey’s driveway, then I chose to define him by a few bad moments.  Just as local parents are defining a wonderful program that’s working.

So to the moms who feel compelled to post negativity about children on Facebook:

SHAME ON YOU.

We’re all still learning about the world, about other humans and especially, ourselves.  We can’t know and love everyone’s child, kiss every cheek that smells like a sugar cookie, care about every milestone ever met.  But for just a minute please imagine you’re there with us, in my son’s blue room where I tuck him in each night.  He’s just out of the bathtub, the scent of doughy Lush soap still on his skin.  You will hear me happily answer a question he always asks before sleep, “So where are we going tomorrow?”  And you may think he doesn’t know our schedule or the difference between weekdays and weekends.  But that’s not it.

He knows our schedule well.  He asks not because he lacks the answer, but because when someone he trusts talks about the future, it makes him feel safe.  Doesn’t that describe most of us?

What are we most afraid of?  Loss?  That maybe one of our loved ones might not be perfect?  Or that there’s no such thing as perfect and tomorrow is not a guarantee?

We’re afraid of lots of things, differences being one, but they’re all related.  We’re afraid of loss, little deaths, big deaths, losing our place in the world.  So let’s work harder to legitimize trust.  Don’t hurt others.  Play nice.  Do all those good things we were taught back in Kindergarten.  Remember the Golden Rule.

Please.

Streetlight

Six weeks into my pregnancy with Julian I thought I was losing him.  I experienced pain and bleeding, and remember a particular moment in a hotel lobby, lowering my body very carefully into a chair so I wouldn’t jostle the fragile life inside me.  I’d had two miscarriages so I knew what to look for, and though the cramping subsided, I never lost the fear of losing my son.

Every night I took walks in the neighborhood with my neurotic dog, a Cairn Terrier who fears trash cans and cameras.  At least once a week I noticed a particular streetlamp at the corner of our lot because it flickered off and on.  It flickered throughout my pregnancy, from June to the end of March, 2007.  Sometimes the light would burn out completely as I watched, and only as I watched.

I took this as an ominous sign, the slow or rapid flickering of the light, the mad flash before it burned out completely.  I’d made it eight months into the pregnancy but now feared my baby would be stillborn.

On March 28th, 2007,  Julian made his appearance.  The obstetrician mentioned that the cord was wrapped around his neck “three times, tight.”  But there were no issues, and his apgar scores were both 9.  He was okay, or so everyone thought.

I wonder now if that early spotting and cramping might have been a warning that something was wrong, if maybe Julian was only one gene duplication or deletion away from being terminated by his own mother’s body.  I can’t know this, and now it doesn’t really matter, just as it doesn’t matter that the cord was wrapped around his neck, that I was forty-two and his father was forty, or that the doctor used Cytotec to soften my cervix (the OB/GYN explained later that the drug is one of many possible suspects in the autism mystery).  There are a million and one theories about what causes or triggers autism.  They matter in general, but not specifically to us now.

If I’d known back in the summer of 2006 that I would give birth to a son with autism, would I have been so careful not to jostle the life inside me?

When I try to imagine Julian without autism, I do see someone who looks and sounds like him, but they’re not him.  There’s only one, and he’s my son.  I couldn’t love another more or better.  My life would be no easier, just a different kind of hard.  Challenges are guaranteed.  We just don’t get to choose which ones we’re given.

I do get frustrated sometimes, like all mothers.  I get frustrated when my kids don’t listen to me, when they create more than their fair share of a mess, when they talk back or refuse to do homework, take a bath, whatever.  The usual.  But even as the frustration bubbles up, I feel gratitude.  I’m grateful for how normal my frustrations are, that autism didn’t get in the way of typical childhood drama.

I do get frustrated with how autism gets in the way of his receptive and expressive communication, but I’m also grateful that his communication deficit has made me a better communicator.  I’m more patient.  I slow down, carefully choose the right words, rearrange or exchange words to help him understand.  Autism has given me an infinite number of ways to love him better, to show him the depth and breadth of my love.  Even the simple act of talking is a profound act of love if I have to put every ounce of my being into saying the simplest things.

Do I wish Julian were cured?  I hesitate to say Yes, but No would be a lie.  I love progress.  Every step Julian makes toward a better life makes me feel proud, elated and relieved.  But I’m not looking for an endpoint.  Our children never finish becoming, and neither do we.  We just want progress, to witness the growing “up” and reaching whatever potential is possible.  With Julian, I not only look at where he’s going, what he’s becoming, but where we came from.

I thought I might lose him from the beginning.  Then after the autism diagnosis, I did lose him.  He died, or at least the idea of him, my hopes for him, died.

Now every step of progress, every perfect sentence or 100% on a spelling test, I get my son back.  The part of him that died is resurrected, again and again.  And that euphoria I feel every time is worth the pain of the autism diagnosis, worth the fear of losing my child.

He’s reborn every time he takes another step.

Three Minds & Wishes

I’m of three minds, or will be once I get through this week.  But today is Monday, and Mondays are just hard.  Hard-hard.

When God opened his creation kit, it must have been a Monday, because the earth was without form, and void, and darkness was upon the face of the deep.  Then God moved upon the face of the waters, in the dark, without tripping on so much as a sea urchin (duh, because they didn’t exist until four days later).

I think every Monday we start over again, because we were resting the day before, the seventh day.  So I’m out of it by Monday, my mind not yet divided into “TO-DOs”.  It’s a slug on Mondays, still gooey from Sunday.  We’re never prepared.

My seven year old son was in a mood today, loud and inattentive.  He couldn’t focus on his homework. I sat beside him repeating over and over again, “If Jim has seven turtles, and Ellen has one more, how many turtles does Ellen have?”

He was mumbling about Itchy and Scratchy from The Simpsons, and sneakily inching out of his chair to grab a Wags-the-Dog toy from a nearby bench.  I yelled more than once, “Sit back down and pay attention!”

We repeated this frustrating exchange at least five times per question.  There were ten questions.

My brain was fried at the end.  I’d been helping my nine year old with her homework as well, checking for mistakes (found two).  Meanwhile, dinner was going, two meals I can stretch for several days — baked chicken thighs for salads, round roast with saffron and rosemary in the crock pot, then something quick for the kids because they were already hungry.

There was laundry in the washer and dryer.  The dogs were hungry and wanted to go outside.  I still had to go through kids’ backpacks and sign crap, read crap, toss and save crap.  Plus I’d been working on a memoir all day, writing about disturbing things in the distant past, and now the present felt disturbing because my autistic son was acting very autistic.

I’d hoped for a good day but no, it’s Monday.  And Mondays are just hard.

I later mentioned to my husband as he was leaving to take the nine year old to dance class, “Autism is harder than usual today.  I’m out of tricks.”

He nodded and suggested I take our son to ride his bike.

I poured a glass of red wine first, sipped dark red serenity while making a list for the week:  tests the kids have to study for, prayers my son has to learn, items we need to practice like tying shoes and piano, playing sentence structure and time-telling games. There were two videos to watch, one about swimming technique so Julian can visualize how to improve; three summers of swim lessons, and he still can’t swim.  The other video is of kids hitting a pinata, so that next birthday party he doesn’t melt down when cut-throat kids dive insanely for candy.  Social skills are hard for kids on the spectrum.  How does one explain pinata etiquette?  There isn’t any.  That’s the problem.

The last thing on the list was Julian’s psychiatrist.  We need to talk about adding attention medicine to the antidepressant he already takes.  His father and I hate this, but it’s time.  He has the attention span of a fly.  Or krill, maybe.

I finished my wine then watched him ride his bike for a while, up and down our street, me wondering when the training wheels will finally come off.  Then I finished laundry and set Julian down in front of the TV with popcorn and a good movie, Aladdin.

Aladdin:  “Wish fulfillment?”

Genie:  “Three wishes, to be exact.  And ix-nay on the wishing for more wishes.  That’s all.  Uno, dos, tres.  No substitutions, exchanges, or refunds.”

Tomorrow I’ll be of a second mind, like a second wish.  I’ll follow my lists, focus on structure.

By Thursday I’ll be of a third mind, the mind that can smell Friday and rest on its way.  And third mind knows my son will one day tie his shoes, swim, ditch the training wheels and master pinatas.  Third mind knows how to trust, and let go:

Aladdin:  “Genie, you’re free.”