Traveling Light

The boy with Aspergers in the movie, Extremely Loud, Incredibly Close, chose to call 9/11 “The worst day.”

In his life, everything had a measurement, a time allotment, a reason.  Until “The worst day.”  When my son Julian was first diagnosed with autism, it was certainly one of my worst days, but more than that, it was the end of one world, and the beginning of another.

I took on a pose that day in October of 2010, a position in which I had to hold very still while being propelled at light speed through many changes.  The blur of activity and panic made it impossible to measure or record time, much less find a reason for it all.

While therapies, new doctors and diets were being added to our life, parts of my spiritual anatomy were also being rearranged.  My son was still my son, only different.  I didn’t know him as I had before.  I would have to relearn him, and become whomever it was I needed to be.  He would need a different sort of mother, more selfless, more deeply involved in his life and the world of autism.  I would have to grow considerably in patience and resilience.  These improvements would require a complete overhaul.  It was no longer enough to be a typical mom; I needed to rise to the level of an Autism Mom.

Once we found a new school (the old one wasn’t “equipped” to deal with him) and were readily accepted, I could relax a little, but not much.  There were gluten-free meals to prepare and scary internet articles to read.  There were snake oil salesmen to avoid.  Sad parents to meet.

The school was twenty-two miles from home.  I passed through a toll booth every morning, and again every afternoon.  I always noticed the toll booth on our way to school, but not during the drive home.  The toll attendants were like gatekeepers of a border separating “normal” from “not”.  Once on the “not” side, I was separate from anything typical.  It was a strange planet with special schools and weighted vests, occupational and behavioral therapists.

Thank god there were schools on this planet.  Being part of a school for children with autism was like being on the inside of a secret, peering into the private lives of mysterious strangers.  I felt like I’d been let in on a partial scholarship, given unearned privileges.  This was eavesdropping on the worst moments, watching children flail and struggle to move in harmony with the rest of the world, while their parents wondered aloud what the future would look like.  We held on to each other, lent a hand even when we were barely hanging on.

Every year got easier, and eventually living with autism became almost as normal as not living with it.  I got used to the kids, to the unexpected.  The school felt a lot like home, despite the distance we traveled to get there.  If I drove home after dropping my son off in the mornings, that meant driving almost ninety miles after adding a second round trip when picking him up at the end of the day.  Oftentimes, I hung out around the school for hours, at the local mall or Barnes & Noble.  I shopped or read for distraction, but no matter where I went, I took the school with me.  I was only on this strange planet because Julian was at the special school nearby, and he was at the special school only because of autism.  Autism was never far behind, as if pulled along in an invisible Radio Flyer wagon with squeaky wheels.

Even at home autism followed, not only in my son, but in the small blue bag he carried to and from school.  The school emblem was on both the bag and his blue uniform shirt.  Autism was on every school handout and homework page, work I wondered about.  Was it typical work for his age?  Or was it only for autistic kids?

His clothes smelled like the school at the end of the day, not a bad smell, just the smell I associated with autism.  And while I felt completely grateful for the school and a somewhat stable life since the “one of the worst days” diagnosis, there was still a weight I couldn’t release, a weight I didn’t even know I carried.  It was that he didn’t attend school with his sister five minutes from home.  That school wasn’t “equipped” to serve him, which meant he wasn’t accepted there.  We weren’t accepted there.

My daughter’s school was a private Catholic school.  Although they wanted to start a program for children with special needs, the idea wasn’t popular with most parents or those on the school board.  Few parochial schools were comfortable with the idea.  There were many reservations, fears about what such a program would do to the status and reputation of the school.

The school did eventually start a program, and I helped with fundraising luncheons for the first two years.  I never felt comfortable while I was there, in the same school who’d rejected my son when I most needed acceptance.  Even with the promise that their doors would one day open for him, I remained skeptical.  I had to see it to believe it.

In May Julian completed his last year at the Westview School.  I’d dreamed about it the night before, not quite nightmares but definitely anxiety-filled.  My hands were numb from the tension in my shoulders, the sudden new weight of wondering how I’d adjust to being without the place that saved us.  It had been a safe haven that made us feel normal again, or close to it.  The twenty-two mile drive had stopped bothering me, because my heart never left the building anyway.  How could I trust this way again?

On August 18th,  Julian walked through the doors of my daughter’s Catholic school for the first time.  His big sister held his hand as she led him to his 1st grade class.  A week and a half later, he’s still smiling.  All is well.

Every day I have to pinch myself.  I can finally let my guard down.  Every promise has been kept, every hope fulfilled.

This morning I drove the familiar twenty-two miles toward Westview for a hair appointment.  Four years ago I had rearranged my life to be closer, so the salon was nearby.  I made note of how it felt to drive through the toll booth now that the “strange planet” existed only in old yearbooks, outgrown uniform shirts and a faded blue bag.  I felt light.  A terrible weight was gone, a burden that wasn’t autism or Westview, but the lack of acceptance that had once existed at his new school.  All I’d ever wanted was for my son to be embraced by our community, our world.  I didn’t want to pull autism around behind me everywhere I went, like a shameful secret, an out of place piece that didn’t belong to the big picture.  I wanted to belong in the world we’d left behind in October of 2010.  I needed to close that wound.

While my spiritual anatomy was rearranged and overhauled during our four displaced years, I couldn’t tell you then what changes had occurred specifically.  But now I see that I learned not only how to live as a family affected by autism, but to accept that new life.  I learned to believe my son could be successful in this world, while accepting that there may be limits.  And while I became all that my son needed me to be, I also became more of what I needed me to be.  I’m no longer ashamed of being different, and have realized that the quickest way out of despair is to reach out to someone else who is suffering.

Even when we’re both barely hanging on, that connection is life-saving.

I stopped by Westview before driving home to write this.  There’s new blue carpet.  Everyone was busy doing their thing.  I showed the receptionist a small clip of Julian in The Wizard of Oz performance this past summer at Fort Bend Theater.  She smiled genuinely.  A staff member asked how Julian is liking his new school.  I told them he’s happy and they wished us well before getting back to what they do best, helping families find their way, then setting them free.

When I walked out of the building I didn’t feel anything pulling behind me.  I felt even less connected to the former squeaky weight as I drove away, through the toll booth in the direction of home.

Goodbye, Scarecrow

I enrolled both kids in a one-week theater camp.  They wanted to perform in The Wizard of Oz, and I saw it as an experiment.  I needed to see if seven year old Julian, who has autism, could hang with the other kids all day.  He’s attended a school for children with autism since he was three, but this year he’ll be mainstreamed in my daughter’s private school and frankly, I haven’t felt confident about the plan.  He could crash and burn in a classroom of twenty-three kids as opposed to eight.  And nine year old Victoria might be uncomfortable having her autistic brother on her turf.

This past Monday was the first day of camp, the day of auditions.  Julian immediately announced to the group of twenty children and two teachers, “Hi, I’m Julian and I’m going to be the Scarecrow.”

Julian really wanted to be Scarecrow.  He’d wanted this since last summer when I’d signed the kids up for camp but had to back out at the last minute.  He could identify with Scarecrow most of all because he knew what it felt like to be intimidated by the intelligence of others, by the normal of others, even if Julian didn’t quite know what normal was.  Scarecrow was funny, cool and had brain trouble.  That’s something Julian could relate to, since autism can make life and learning hard.  “I just can’t fink today,” he says when struggling to find words or answers to homework questions.

On Monday I explained to him that he might not get the part of Scarecrow.  I worried about his reaction to not getting what he considered to be his part.  He’d been waiting for this moment, to act on a real stage, in a real play, to be the one and only Scarecrow.  More than anything, he’d wanted to be Scarecrow.  And I had no contingency plan.

I figured the teachers might give him something easy, a part that would blend in somewhat unnoticed, like the Winkies or Munchkins.  But deep down I hoped they’d just go with it, give him what he wanted.  He’d watched the movie a thousand times.  He acted Scarecrow’s part like a pro ...if I only had a brain…

On Monday afternoon I picked the kids up from camp, braced for a meltdown.  I asked my nine year old daughter first what part she would play while watching my son’s face.

“I’m the Witch!  Just like I wanted!” she said.

“And Julian, did you have fun today?  What part did you get?”  I was mentally lining up the most exciting adjectives I could think of to describe the lesser roles.  Then he said, “I’m the Wizard.”

The Wizard?  I took the script from his hands.  There it was, three pages of dialogue, one entire page of, essentially, a monologue.

We would have to practice a lot to pull this off.  The script was only somewhat like the movie, so memorizing movie lines wouldn’t work.  My autistic seven year old would have to learn three pages in three days, become a character he didn’t really identify with, didn’t want to be.  He’d never memorized anything but favorite movie characters’ lines — he was Scarecrow, Simba, Pinocchio, Mike Wazowski…  The list was very long, but Wizard wasn’t on it.

Getting him to practice was a struggle.  There were hard words like testimonial and beneficent, tongue twisters like good deed doer.  Julian struggles with pronouncing even the simplest words because of his apraxia, a severe language deficit that often goes with autism.  He also struggles with social skills, nuance, with everything.  Maybe I’d made a mistake.  Maybe he wasn’t ready for this now, if ever.  He might fail miserably on that stage, might be humiliated in front of peers and parents.  People can be cruel, children and adults alike.  What had I done?

We practiced our lines when we could, which wasn’t very often.  We tried to squeeze practice between speech therapy appointments and swim lessons, then just before bed or in the car on the way to camp.  It wasn’t ideal, and he really wasn’t into it.  We would get only halfway through the script and he’d say, “No more.”

He refused to practice the group song, Somewhere Over The Rainbow.  He didn’t feel like singing.  Not all dreams came true.  Why sing about it?  I couldn’t read his mind, found its mysteries hard to even imagine, but apathy was probably a close approximation.

During the drive to theater camp this morning, I struggled to keep my eyes on the road while reading Julian’s lines out loud, one last time, hoping that by some last minute osmosis they would sink in.  My daughter’s Witch character was spot on.  Then she sang like an angel about blue skies and rainbows while the Wizard just stared out the car window, deep in thought.  “Sing it again, Victoria,” he’d say.

“But why won’t you sing?” she asked.

“I don’t know.”

When the green velvet curtains opened a few hours later, I held my breath.  A few minutes in, after Dorothy crashed in Munchkin Land, Julian walked on stage with other Munchkins.  Surprisingly, he had a second part as a Munchkin.  Suddenly he was singing Ding Dong the witch is dead… His voice sailed above the others.  He stayed on his mark, danced, sat or stood still at the right times.  He looked like any other child, except he was the only kid with a propeller on his cap. And he was beaming.

The role of the Wizard was played mostly behind a curtain, and without a microphone, but he seemed to know his lines, or perhaps the instructors were right there prompting him.  Then came the hard part.  The green curtain opened and the Wizard was revealed.  Julian was on his own.  Dorothy told him he was a very bad man.  I knew what came next.  I waited, not breathing again.  Julian fluffed the tails of his green wizard jacket then turned to the audience.

“Oh no my dear, I’m a very good man.  I’m just a very bad wizard.”  He spoke clearly.  The crowd chuckled.  They loved him.  Then he turned to Scarecrow, and his lines flowed freely, until, “There’s one thing you haven’t got…a…”  Julian couldn’t remember the word diploma, so he substituted  “degree.”  Where had he learned that word?

One by one, the Wizard pulled healing props out of his black velvet bag, the missing pieces for Scarecrow, Tin Man and Lion.  The Wizard had come through.  He remembered his lines.  He’d known them all along.

All the children sang Somewhere Over The Rainbow, the witches, the Munchkins, a lost girl and her outcast friends.  I realized that the reason we root for the lost and forgotten, long to see them shine as heroes, is because they’re us.

Julian had gotten his moment, only different than he imagined.  That’s how life works, throwing us curves to see what we do with them.  All we need is a little faith, and our dreams — or some version of them — really do come true.

The Kiss

I watched the little boy and his family during mass this evening.  I know his mother.  The boy is her third child, the first and only boy, probably a boy longed for by the father who held him during the entire service, who kissed the boy’s soft cheeks with aching tenderness.

The child has Down Syndrome.  The kisses were saying:  I love you.  I love you in spite of, because of, no matter what.  I love you for the world to see.  They were the perfect kisses, whole, real, infinite.

He walks on his toes.  He can’t sit still.  His almond shaped eyes are ice blue, hair surfer blond.  He is maybe five years old.  His tennis shoes were decorated with Spider Man.

I compared him to my own son, now seven.  My son is handsome too, dark hair and Hershey’s Kiss eyes.  He is funny, affectionate, adorable.

And he is autistic.

He has trouble sitting still, staying on task, understanding language.  He has the social skills of a three year old, gets stuck on ideas and movie scripts.  He may never live independently, have a job, drive a car, marry or vote.

I kiss him a lot, an inordinate number of times each day. I kiss him in an almost desperate way, breathing in his cookie smell, the sweet of his doughy cheeks.  I kiss him to disappear from my world, to enter his.  I kiss him to seal the moment, a perfect eternity.

The other mother and I were disappointed when we learned that our sons weren’t the sons we’d hoped for, expected.  Was it wrong to expect a healthy child?  Her third, my fourth.  We’d only known success, healthy, the usual.  We took these things for granted, believed that nature only screws up other people’s kids, not ours.  We were special, different, protected.  Our lives were lucky, cocooned.

Not so.

Tonight, with my eyes half focusing on the alter and two priests, one with a cane, I saw a glimpse of my future.  My son was in his early twenties, strong, maybe a little too strong.  I was medicare age, not so strong, still caring for the son who wasn’t the son I’d hoped for, expected.

Some days, this image doesn’t scare me.  I love him.  We’ll be okay.

Other times, the image is too terrifying, like tonight.  I didn’t want to look at it, so I refocused my eyes, stared at the slain Jesus, the priest barely able to walk, his blood red vestment and stole, the white alter approached with reverence where the ordained bow and kiss the clean white linens.

They have a ritual.  I have a ritual.  We have days, which begin and end about the same.  We wake up, every day, and live.  I feed my son, literally and figuratively.  I walk beside him in a world made for others, not the disabled.  He is different.  And so am I.

I’m a better person, mother, human, because of him.  I’ve made more friends, real friends, living in Autism World.  I can write from the bottom of despair, parental despair, write my way from bottom to top.  I can make another mother of a disabled child smile, because it’s not over, even if it’s not the adventure she’d hoped for, expected.  I’m right there beside her and we’ll find ways to laugh at the absurd, squeeze our over-sized issues into a new Spanks-like normal.  We can have normal, just different.

But still, sometimes I feel disappointed when I remember what might have been, when I forget how much I love him, when I compare; when I focus on the cane and not the human, on the white and not the alter, on the cross and not the kiss.